Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => Discussion/Communication Research => Topic started by: Stef on May 28, 2011, 11:07:09 PM

Title: NORD Research Grant
Post by: Stef on May 28, 2011, 11:07:09 PM
Hello All,

I've been in touch with demografx and Daveman about the need for solid, objective research on POIS.  They both felt it was appropriate for me to provide some input about this to the group.

POIS is one of those rare disorders that is really ripe for research.  Because of the very brave efforts of you men (I mean this sincerely) to post data, describe symptoms graphically, report on possible antidotes, etc, and Animus' taking the lead on starting to raise public awareness through the TLC program, I think the next logical step is starting a true research grant fund.

POIS, which I had never heard of before demografx wrote to NORD about it, is an awful, dramatically life-altering disorder. From what I've read on both forums, POIS can be seriously disabling for anyone suffering from it, making it very difficult to earn a living, engage fully in activities of every-day life, and can cause countless sick days. The depression and other psychiatric symptoms that occur seem almost normal, given the situation, but they may even be part of the effects of the disorder, itself.

But I am willing to bet that the solution(s), pharmaceutical or otherwise, will be found sooner rather than later, once more solid research is undertaken.

As you all know, there is a pitifully small amount of published research on this disorder.  You men are going to have to change that!

The cold, hard truth is that most research for rare disorders needs to start as a "grassroots effort." Groups (or--individuals) need to raise the initial funds -- government and/or private industry are not yet interested, as there is practically nothing published to capture their interest.  They don't know you yet or what you are going through.

The big money for funding of research on rare disorders comes after some solid, basic research is undertaken in the form of small (relatively small) grants awarded to honest, highly-respected, impeccable researchers. That's the truth, plain and simple.

NORD has a 100% above-board honest, objective, very formalized research grant program.  It's a "seed grant" program, meaning that these grants are for the initial basic research that will "plant the seed" for major future funding from government or private industry.  However, there is always a chance that a seed grant, itself, will give rise to a treatment -- it has already happened within NORD's grant program.

As I've told demografx and Daveman, I don't care (meant in the most respectful terms) where you fund your research.  But I do really care that you begin the process of collecting funds, and giving them to a reputable place. A a RN working for a great organization that respects the individual -- and that knows about the isolation and misery that rare disorders cause -- I think you would do well to consider raising funds for a POIS research grant through NORD.

The basics are as follows:

Minimum cost to offer a research grant -- $33,500 US. ($30,000 goes to the researcher, and $3,500 goes to NORD's administrative fees.)

NORD is a not-for-profit organization (a 501(c)(3) -- all donations are tax-deductible for the donor.

NORD does not profit from the grant program.  In fact, we barely break even on the expenses of administering a grant.

NORD does all the work in finding potential researchers of impeccable quality, and then monitoring the progress and making the payments. The money is held until on-going requirements are met by the researcher.  Our Medical Advisory Committee (MAC), each a researcher in his/her own right, choose the award recipient.  The donors don't have a say in who gets the award, but they do have input on how to phrase the goals of the research.

Here is a link to NORD's research grant policy from our website -- http://www.rarediseases.org/medical-professionals/research-grants. I encourage you each to go to the link and read about our program.  And I will be happy to answer individual questions from anyone.  You can reach me directly at rn@rarediseases.org or research@rarediseases.org.

This is something that needs discussion amongst yourselves, as a group.  

I believe that POIS is a medical condition that would be of great interest to researchers, especially those who specialize in the area of immunology and autoimmunity.  In addition--and I know this might be a bit controversial but am just throwing it out there -- it's unclear whether "post-orgasmic illness syndrome" is the best name for this syndrome, since apparently an ejaculation is not always necessary to go under the spell of POIS. "autologous semen illness," or "autoimmune seminal fluid syndrome," may be a more succint term. Just a thought that I wanted to share.

Please discuss this amongst yourselves.  Use PMs, or--discuss it openly.  I think that POIS time has come--you men deserve the respect of dedicated, highly-regarded researchers who also have that magic ingredient -- compassion.

Best to everyone,
Stefanie Putkowski, RN
NORD



Title: Re: Funding a POIS research grant
Post by: Willem on May 29, 2011, 12:14:00 AM
Hi Stefanie,

Thanks for the notification.  That's very interesting.  Just for our understanding, what would be the "deliverable".  Is it the type of thing where they will characterize POIS sufferers and their symptoms etc. or would it involve a medical evaluation of a number of us?  How would it differ from Dr. Waldinger's papers that characterize the spectrum of experiences and propose a treatment.  Thanks.

Willem
Title: Re: Funding a POIS research grant
Post by: B_Daniel on May 29, 2011, 03:01:21 AM
Stefanie, I've seen your latest posts on NSF and want to thank you for the work you're doing.  What's the story behind Dr. Dimov agreeing to evaluate men with POIS?  Is this part of the POIS research grant you've been writing about, or is he doing this on his own will? 

A few ppl have discussed raising some funds.  I don't mind contributing some money towards high quality research, if we could agree upon the right thing to study.  If a researcher had a legitimate chance of being able to figure out what part of the seminal fluid we are allergic to, and narrowing down which gland is responsible for the production of this substance, we'd be taking a giant leap forward and I would love to contribute some $.  What's the status of our "fund", where do we plan to put this $, and why are we not fundraising on NSF more vigorously?
Title: Re: Funding a POIS research grant
Post by: Daveman on May 29, 2011, 10:40:50 AM
Hi Stefanie,

Thanks for the notification.  That's very interesting.  Just for our understanding, what would be the "deliverable".  Is it the type of thing where they will characterize POIS sufferers and their symptoms etc. or would it involve a medical evaluation of a number of us?  How would it differ from Dr. Waldinger's papers that characterize the spectrum of experiences and propose a treatment.  Thanks.

Willem

We basically design the deliverable, if I understand it correctly. There's a RFP (Request for Proposal). The donor, writes the specifications, and researchers bid on the spec. Obviously if the RFP doesn't attract ANY attention, then you'd probably have to redirect your goals. I think there's only one offering of RFPs per year, so each re-write is a year's delay. So it behooves one to target the RFP, the best fit between what's out there and what one is looking for. I think that conditions run in our favour, because I feel we are "close" the potential thread of research in POIS.

We would be best to point to a best fit to establish proof positive cause at least. Then a second push (if needed) would lead to cure.

The researcher in the end would decide, if he would use information of our population or not. I figure he'd be nuts not to.

This is my understanding from conversations with Stefanie up until now. I'm sure she'll be checking in to correct me if I'm wrong or to elucidate further if I've missed something crucial.

Title: Re: Funding a POIS research grant
Post by: Stef on May 29, 2011, 11:10:05 AM
Hi Willem and B_Daniel,

If there is a way to answer individual posts here, Daveman will let me know.  For now, I'm going to combine your questions into one long response, hoping that it covers questions of others as well.

Willem -- Regarding the "deliverable" of a POIS research grant through NORD's grant program  -- it's an impossible question to answer -- but also a perfect question of you to ask.
The immediate deliverable all depends on the study that NORD's MAC (Medical Advisory Committee) ultimately chooses, so the deliverable might not be immediate--or, it could be immediate. (I hate answering questions in this manner--but it's the truth, so there's no other way to answer it.)
I can't speak for the MAC, but can advise that they are -- without question -- completely trustworthy, objective, vastly experienced, and 100% ethical. They KNOW how to judge a grant's potential, having published their own research and being seasoned scientific/medical researchers. Based on the six years I've spent in their presence, they choose grants that have the highest potential and scientific merit as related to the specific disorder. They score each grant on their own, then through teleconferences that I'm fortunately involved in (it is absolutely fascinating and is why I know how they operate and why I unconditionally trust their judgement), they openly discuss their reasons for scoring as they did.  These discussion sometimes end up in a MAC member changing his/her score--which is a good thing--because shared knowledge is key.
Incidentally and for the record, NORD's MAC does their work for NORD on a totally voluntary basis.  While they are each practicing clinicians, they are not paid for their NORD work, there is no money exchanged.  They are pure researchers, and are in step with NORD's mission to help find treatments and/or cures for rare disorders.
 
For a POIS grant, as for every grant, they will base their scoring system (the same one used by NIH -- National Institutes for Health) on (1) the scientific merit of the study as it relates to a treatment or cure for POIS and (2) the potential for future research funds from large corporations (i.e. pharmaceutical companies) or NIH grants.
Because of how we would phrase the "RFP" (Request for Proposal--a term you should all get familiar with!) we would attract an array of researchers from the fields of immunology, allergy, autoimmune disorders, endocrinology, urology, and sexual medicine--probably other fields also. Some of them might be undertaking "molecular" studies, meaning in very basic terms -- identifying the problem, (i.e.what exactly is going on here?).  Is there a protein, an enzyme, an immunoglobulin, etc, that seems to be setting off this cascade of events. Or--what are the blood tests really showing --is there a hormonal imbalance that suddenly occurs, an immune reaction, allergic reaction, etc? Or, is there a gap/opening in the seminal fluid-producing system and, if so, how to overcome this?) This minutiae is what solves the mystery and leads to the treatment.
The initial research could be on lab rats (or zebra fish, dogs, etc.). -- This could seem disappointing-- but should not be! Often, the most important research is to actually create an animal model that develops POIS and can then be studied. This is how most disease treatments are discovered.
On the other hand, there could be an immediate "deliverable."  If the study involves human subjects, there is always a chance of hitting the nail on the head quickly. It has happened already within our grant program--very dramatically.  It all depends on the study project. If it involved human subjects, my guess is that you -- or at least your specimens -- would be an extremely important part of that type of study.

One big difference between a NORD grant and Dr. Waldinger's study is that there would be a control group if a treatment were tested on humans.  There is absolutely no way that our MAC would award these precious funds without a control group involved if the study was for a treatment or testing of human subjects. (This is not to disparage Dr. Waldinger in any way -- in fact, he would be welcome to apply for your grant if he wished to--we would invite him to apply--along with many, many others)

Lastly, the grant is open to international as well as American researchers.  Wanted to make that clear to you all.

B_Daniel -- Dr. Dimov and Dr. Bewtra are starting their own preliminary research, independent of NORD. I'd read a blurb by
Dr. Dimov about POIS through a google alert, and decided to contact him to ask if he was interested in evaluating men from your forum. (This is a big part of what I do at NORD--finding specialists for patients).

They are the kind of researchers for whom we have the greatest respect, because they show evidence of true dedication and interest in the disorder.  The evidence is in the time and funds they have already used from what is probably a limited budget. (They are from major research institutions where there is likely a small amount of funding for their research, and I seriously doubt that either of them would be at these institutions, Creighton University and University of Chicago, unless there was a budget that at least allows them to do some independent research. But that small budget will only take them so far.)

NORD has nothing whatsoever to do with the preliminary research being carried out by Drs. Dimov and Bewtra. It was simply a lucky break that they came though via a google alert.

FYI, regardless of the researcher or his/her institution, part of their NORD grant application specifically calls for a detailed explanation of why NORD's funds (which are your funds!) are needed by them.

As I explained to demografx and Daveman, and this is a major point that everyone needs to be comfortable with--you will not have a direct say in the direction of the research or in who would be awarded the grant.  This is all determined by NORD's MAC.  However, the RFP will be explicit about the goals of the study, and you can definitely have input on those goals.  Since I've already explained this part to demografx and Daveman, please ask them to share anything I've written to them with you.  There are no secrets about this.

B_Daniel--you've asked a GREAT question about "the status of your fund" and why your group is "not fund raising more vigorously." There is no fund yet at NORD for POIS--and I don't know if there are any POIS funds elsewhere. You men, your loved ones, friends, etc., will need to start donating and fund raising specifically for a POIS fund at NORD (if that's where you all ultimately decide to put your funds).  Donations can be made online with a charge card, via postal mail by check, or via telephone directly to us (no middle man involved--you will speak with a human being--not a voice message system, at NORD) with a charge card. The website link that I provided explains that.

As I've mentioned already, I have a sense that POIS is a misnomer (but I could easily be incorrect about this). I would be willing to ask our MAC their opinion as to what, exactly, to name your fund. The RFP could use the term, "POIS" within it, but this seems to be more than "post-orgasmic illness syndrome."  I don't know who came up with the original name of this disorder, but it might benefit by a name change for the subject of a research grant.  It's not my call, and please don't be concerned about that now.

Since the funds would come from your group, your friends, etc -- the POIS forum would be listed in the title of the RFP.
It would be appear something like this: "NORD, with Funding by the Patient Group, POISCenter.com, is offering a Request for Proposals entitled, "___________________"  We (you, our MAC, and I) would figure out the BEST title for your grant.

I hope that answers the questions that have been posted, and then some.  This requires discussion among yourselves.  If you are not comfortable with NORD's grant program, it's OK! Please know that this is fine--not everyone likes our program, because they want more of a say in the decision-making process. There is no right or wrong answer on this.

 Nonetheless, research funds are needed, regardless of where to put them, and they need to start with you!



Title: Re: Funding a POIS research grant
Post by: demografx on May 30, 2011, 10:28:30 AM
About a year ago or so (2?), about half-a-dozen NSF-POIS members PUBLICLY  pledged around $6,000.

Since that was done with NO idea where to apply it, it seems encouraging that we could raise much more!!

Vandemolen, wonderful idea about DONOR ANONYMITY!
Title: Re: Funding a POIS research grant
Post by: Daveman on May 30, 2011, 11:02:23 AM
Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.

We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.

Title: Re: Funding a POIS research grant
Post by: Daveman on May 30, 2011, 08:33:01 PM
Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.

We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.


I clicked on the NORD-site. But is NOT possible to donate anonymous.

They ask for names and stuff, but I think that's just for internal accounting reason. I looked around the site a little and couldn't find a place that names the donors, so I don't think they're public. I'll verify though.
Title: Re: Funding a POIS research grant
Post by: Daveman on May 30, 2011, 08:45:19 PM
Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.

We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.


How did you organize that? Did they make over the money on your personal account? Or is there already a POIS-bankaccount? And is the 6000 dollars already spend?

I think a POIS-account, trough NORD or in another way, must be opened very quick. So we can fund money. It would be wise if the money goes to dr. Waldinger and his team. They have a head start. So he can make a bigger team and things go faster.

I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.

BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.

Title: Re: Funding a POIS research grant
Post by: Ccconfucius on May 30, 2011, 09:01:48 PM
This is definitely right time to do this, we have been talking about it for a while, actually more like demo bringing it up.
I believe we should have two pots, one for nord and another for dr waldinger, we can have dr waldinger doing his thing and have a different researcher looking at pois from a different perspective. 
Title: Re: Funding a POIS research grant
Post by: B_Daniel on May 31, 2011, 01:43:28 AM
If there's no cure for this thing so be it.  But to not know exactly what is causing our symptoms, how it's doing it, and why to us, just doesn't sit right with me.  Our forum has advanced such a long way, but we've really relied upon Dr. Ws and other's research to get us there.  We need more research to get to the next level, and in my opinion, now's the time.  

Personally, I'd like to go with NORD.  Stefanie's passion to help us gives me comfort that this process will be managed the right way.  Through her efforts reaching out to the scientific community, she's proven how valuable she is to us, and with some money behind her, she's sure to get us even more attention / success.  

There are going to be lots of little issues, such as anonymity in donations and what exactly our goals will be.  But we've got really bright, hardworking individuals in our forum who can easily facilitate the write-up of the RFP / goals of this research and sort out the other minor details.  I've been putting a lot of thought into this and I'd like to pledge a $5,000 donation.  This research would mean a lot to all of us, and together I'm hopeful we can raise enough money to attract talented, passionate researchers and get this seed grant program started.  My only stipulation is that if we can't get research approved through NORD during a reasonable time-frame, that the money be returned.  Let's get this fund set up!  
Title: Re: Funding a POIS research grant
Post by: Vincent M on May 31, 2011, 01:56:42 AM
Thanks for all your help, Nurse Stefanie. You're an extremely valuable asset to us.


As I explained to demografx and Daveman, and this is a major point that everyone needs to be comfortable with--you will not have a direct say in the direction of the research or in who would be awarded the grant.  This is all determined by NORD's MAC.  However, the RFP will be explicit about the goals of the study, and you can definitely have input on those goals.  Since I've already explained this part to demografx and Daveman, please ask them to share anything I've written to them with you.  There are no secrets about this.

I see this as possibly being an issue. We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads. For this reason I agree with ccConfucious in that we should start two separate donation funds: One for a research grant through NORD and one directly for Dr. Waldinger and his team if possible. Then our members would have a choice in where they want their donations to go. In the end if Dr. Waldinger for some reason couldn't take our money then the members who donated to him could put their money towards the NORD fund instead if they wanted.

And damn, B Daniel, if you're serious about that $5,000 then thank you man lol. I don't know if I can donate anything. I'm being supported by my family atm and they're pretty strapped for cash. I'll ask my mom.

Also we should let the Sexual Exhaustion forum know about this research grant oppurtunity.
Title: Re: Funding a POIS research grant
Post by: Vandemolen on May 31, 2011, 06:14:10 AM
I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.

BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.

Yes I was refering to Demo's post. I thought the fund was already given. But if it is open for all researchers that is better.
Title: Re: Funding a POIS research grant
Post by: Ccconfucius on May 31, 2011, 08:34:58 PM
I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.

BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.

Yes I was refering to Demo's post. I thought the fund was already given. But if it is open for all researchers that is better.
the pledges were just verbally declared nothing has been given yet.
Title: Re: Funding a POIS research grant
Post by: demografx on May 31, 2011, 09:10:02 PM
From Vandemolen's post: (sorry, tech prob with my posts "jumping" when I try to reply)...

"How did you organize that [$6,000 pledged at NSF for POIS research]? Did they make over the money on your personal account? Or is there already a POIS-bankaccount? And is the 6000 dollars already spend?"

Reply: It was only pledged. Spontaneously.

"I think a POIS-account, trough NORD or in another way, must be opened very quick. So we can fund money. It would be wise if the money goes to dr. Waldinger and his team. They have a head start. So he can make a bigger team and things go faster."

Reply: Auto-immune is only one of many theories. Personally, I would like to see a comprehensive/global examination of what our Forums and other sufferers on the Internet, reported by B_Jim, have uncovered in its 10,000+ postings since 2007. This is a treasure trove of information on POIS unparalleled anywhere. And developed from hundreds of real sufferers WHOSE PRIMARY COMPLAINT IS POIS. I could be wrong, but I'm not 100% sure that the Netherlands studies consist of patients whose PRIMARY sexual-medical complaint was POIS. For example, I think that there is a disproportionately large group of people primarily suffering premature ejaculation, which may or may not reflect or be similar to/representative of our group - - or POIS sufferers as a whole.

But I like the idea of allowing possible funding of different options, depending on individual(s) preferences.
Title: Re: Funding a POIS research grant
Post by: B_Daniel on June 01, 2011, 12:55:37 AM

We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......


This just isn't a concern of mine - it's really not.  I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.

And per the thought that all our money should be given to Dr. W... I personally disagree that that's necessarily the right approach.  Yes, he's made fantastic progress, but it'd be very do-able for another to build upon all that Dr. W's established.  I can only imagine that Dr W. would be very willing to share his progress with another researcher and support his efforts.  Also, having someone w a different background, with a fresh perspective, might increase our chances of success.  Lastly, our money might be stretched further if applied to a team somewhere else in the world.  rupees are a lot cheaper than euros.  But if people prefer to give to Dr. W, let's open a fund for him too.  And if we're short on the grant money bc our dollars are split to different causes, then we can explore other research options at that time.  

In regards to us not having control over the direction of the research, Stefanie, have you experienced in the 150 administered seed grants over the life of NORD, that many donor groups were, as a whole, overwhelmingly upset by how the research was carried out?  I mean, what I'm getting at here, is that who's to say that we know better than the Advisory Committee over the type of research that is most likely to meet our goals.  Unless we all want to sign up for 10 yrs of schooling to become specialists and carry this research out ourselves, we've got to learn to have some faith.  And it's not like we won't be involved at all.  We'll get to set the goals ourselves and it's quite likely the researcher will be coming to us for test subjects and data from our forum.  

I view our forum as a tightly knit group that is all motivated by the same thing.  I applaud the Sexual Exhaustion forum for starting their own movement, but it's not nearly as specific, as serious, or as developed as our group is.  What our group is lacking at this point is fundraising and research.  So what's the next step?

Stefanie - would it be possible to set-up a fund and make donations anonymous (or at least anonymous to everyone but NORD).  Also, would it be possible to make donations such that people can withdraw their contributions if they aren't satisfied by the goals/RFP that we have yet to write-up?  Maybe we place a date 3 months from now when the money becomes "hard".  It'd be nice to start fundraising immediately and then fine-tune our goals later.

Can we similarly, on the same NORD site, set up a separate fund for Dr. W, that we can withdraw and give to him at some future point in the future?  i don't know of another "safe" place that will store our donations.    
Title: Re: Funding a POIS research grant
Post by: Vandemolen on June 01, 2011, 10:41:33 AM
B_Daniel, I think the next step is a foundation for POIS patients. Can be for the US or UK only, or worldwide. A foundation with a professional director. And maybe 1 or 2 co-workers. This persons don't have to be POIS-patients, but must collect money, bring the attention on POIS, answer question of new POIS-patients. Just like the foundations of people with heart problems. But maybe this is another topic. It's only an answer for the next step. We now have our own website, maybe a POIS fund... a foundation would be next step. But it's all about money if we can go on.
Title: Re: Funding a POIS research grant
Post by: demografx on June 01, 2011, 11:02:28 AM

We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......


This just isn't a concern of mine - it's really not.  I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.


B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.

Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!

Pinhead "expert" right next door!

The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.

But you're right, it's a thin line between that and hypochondria.

And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :)  I'm only suggesting that we keep an eye out for this recurring problem.
Title: Re: Funding a POIS research grant
Post by: demografx on June 01, 2011, 11:48:43 AM

I've been putting a lot of thought into this and I'd like to pledge a $5,000 donation.


That is so fantastic! Thank you, B_Daniel!
Title: Re: Funding a POIS research grant
Post by: Daveman on June 01, 2011, 12:54:43 PM

We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......


This just isn't a concern of mine - it's really not.  I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.


B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.

Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!

Pinhead "expert" right next door!

The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.

But you're right, it's a thin line between that and hypochondria.

And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :)  I'm only suggesting that we keep an eye out for this recurring problem.

Well I, perhaps naively, have much faith in the NORD MAC. I understand they have complete say in who is selected for the grant. Based on the RFP. The RFP is written by others, but we have the opportunity to look it over make comments and I think, even accept or reject it.  That would be necesary I think. If the RFP is not to our liking, then we should be able to reject it and go somewhere else.

Where are we going to go if we can't find satisfaction at NORD? We'll just be jumping from the frying-pan to the fire. We aren't expert enough to make independant decisions about who the best researcher should be.

And I wouldn't want to let down our good friend B_Daniel et al here.

Title: Re: Funding a POIS research grant
Post by: demografx on June 01, 2011, 01:43:53 PM

We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......


This just isn't a concern of mine - it's really not.  I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.


B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.

Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!

Pinhead "expert" right next door!

The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.

But you're right, it's a thin line between that and hypochondria.

And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :)  I'm only suggesting that we keep an eye out for this recurring problem.

Well I, perhaps naively, have much faith in the NORD MAC. I understand they have complete say in who is selected for the grant. Based on the RFP. The RFP is written by others, but we have the opportunity to look it over make comments and I think, even accept or reject it.  That would be necesary I think. If the RFP is not to our liking, then we should be able to reject it and go somewhere else.

Where are we going to go if we can't find satisfaction at NORD? We'll just be jumping from the frying-pan to the fire. We aren't expert enough to make independant decisions about who the best researcher should be.

And I wouldn't want to let down our good friend B_Daniel et al here.



Please don't misunderstand: I HAVE COMPLETE, UTTER FAITH AND TRUST IN NORD.

I just want us to inject as much information as possible TO NORD about this medical bias that is so pervasive about psychological/psychiatric causes.

As I said, I hope that this overcautious approach is totally unnecessary with NORD! I certainly know that Stefanie Putkowski is perfectly aware of this bias.

Sorry if I miscommunicated: I am VERY enthusiastic about NORD!
Title: Re: Funding a POIS research grant
Post by: Daveman on June 01, 2011, 02:06:02 PM

We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......


This just isn't a concern of mine - it's really not.  I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.


B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.

Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!

Pinhead "expert" right next door!

The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.

But you're right, it's a thin line between that and hypochondria.

And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :)  I'm only suggesting that we keep an eye out for this recurring problem.

Well I, perhaps naively, have much faith in the NORD MAC. I understand they have complete say in who is selected for the grant. Based on the RFP. The RFP is written by others, but we have the opportunity to look it over make comments and I think, even accept or reject it.  That would be necesary I think. If the RFP is not to our liking, then we should be able to reject it and go somewhere else.

Where are we going to go if we can't find satisfaction at NORD? We'll just be jumping from the frying-pan to the fire. We aren't expert enough to make independant decisions about who the best researcher should be.

And I wouldn't want to let down our good friend B_Daniel et al here.



Please don't misunderstand: I HAVE COMPLETE, UTTER FAITH AND TRUST IN NORD.

I just want us to inject as much information as possible TO NORD about this medical bias that is so pervasive about psychological/psychiatric causes.

As I said, I hope that this overcautious approach is totally unnecessary with NORD! I certainly know that Stefanie Putkowski is perfectly aware of this bias.

Sorry if I miscommunicated: I am VERY enthusiastic about NORD!


Whew, you had me wondering there.

Although I agree with you 100% that even many top experts are still pin-heads, I think B_Daniel is right. NORD sees plainly through all that. I think many if not most rare disorders get the same response as we do.

There's a television show about rare disorders, and as far as I can see, most if not all are wrongly diagnosed or ignorantly treated, until the frustration gets so high that the patiens themselves smack some sense in to the doctors.

Title: Re: Funding a POIS research grant
Post by: demografx on June 01, 2011, 06:52:33 PM


Stefanie at NORD just reassured me:

"Demo,

You contacted me and I'm totally aware of the concern.  It is a valid concern!  The grant will NOT go to a psychiatric researcher, as this will not be described in the RFP as a psychiatric disorder -- because it isn't!

There are many, many physical disorders that present with psychiatric symptoms, but those symptoms are the result of the underlying physical disorder. This is not at all unique to POIS, just FYI.  

We would want to mention some of the psychiatric symptoms of POIS in the RFP (if the group agrees), because those symptoms are very important (i.e. "brain fog") -- but we would make it 100% clear that POIS is not a psychiatric disorder. "


Sincerely,
 
Stefanie Putkowski, RN, BSN
Research Program Administrator

Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions
 
--------------------------------------------------------------------------------------------

Stefanie, as always, you're the greatest! Thank you!
Title: Re: Funding a POIS research grant
Post by: demografx on June 01, 2011, 07:54:26 PM

I'd like to pledge a modest amount by calling NORD with my credit card.

Do we first need to agree on our "account name"?
Title: Re: Funding a POIS research grant
Post by: Daveman on June 01, 2011, 08:11:35 PM
WAY TO GO DEMO
Title: Re: Funding a POIS research grant
Post by: Vandemolen on June 01, 2011, 08:42:50 PM
If there are more visitors on the new website we can find sponsors for the website. And maybe on the homepage a link how to give money.

I am sure that a lot of us will give what they can afford. But the most money we can raise is from sponsors like companies. And maybe a grant from a government.

In The Netherlands there is the ZZF, a fund for rare diseasses. They collect each year a few projects. They give money to research. Maybe there are more funds and foundations in the US and the UK.

http://www.zzf.nl
Title: Re: Funding a POIS research grant
Post by: Ccconfucius on June 01, 2011, 09:24:28 PM
before opening an account have you read this.
http://www.rarediseases.org/medical-professionals/research-grants/policy

go to donating for rare disease research.
it pretty much says if account dosn't reach a certain amount after a certain amount of period, the money money will be transfered to a general account of something similar.
if this rule is not flexible May be we should tally it up first within us before starting an account.
Title: Re: Funding a POIS research grant
Post by: Stef on June 01, 2011, 09:29:36 PM
Hello All!

I'm sorry that I couldn't respond to questions earlier today.  Ironically, I've been completely bogged down with a specific task related to our current research grant cycle -- a task involving deadlines.  That task is finally completed--for now!

You've asked several questions and raised seriously valid issues.  As I mentioned to Daveman and demografx in an email a week or two ago, the "world" of research grants is sort of like visiting a foreign county where you don't speak the language -- but only at first

Usually, individuals or groups who wish to set up a research fund at NORD for the first time ask some initial questions, receive answers, and then more questions come up -- for months sometimes. This is usually accompanied by major anxiety about entrusting these hard-won funds to the wrong place -- the anxiety can be sensed from our side, even without it being expressed. Then, there is the major issue of our MAC ultimately making the grant award determination independently (i.e. how will they choose the best researcher/project for our needs when there is barely any research on it in the first place?) Also, there is always a worry (not on our part--on the part of the donors) that we'll choose a "pinhead."

Here are some comments and answers that I hope will clarify some of this--

B_Daniel -- thank you for expressing your confidence in our research grant program! 
You asked how many of the 150 administered seed grants that we've administered over the years have left the donors unhappy about the outcome or the way the research was performed.  The answer is unequivocally "NONE."
We have several groups who repeatedly have us administer their grants -- one group has actually advised that they want to utilize NORD's grant program for the next few years, at the least.  They would like to have their own grant program, but realize that their disorder is RARE -- and many of their own medical advisory committee would want to apply.  There would be no one left to review and determine the award recipients!

(2) There have been a few grants awarded (usually for rare forms of cancer) where the study looked at the use of specific drug combinations for treatment.  If the study ultimately shows that these drugs did not work, there is always great disappointment for everyone (honestly -- the researcher is usually the most upset!).  However, these types of studies in humans are extremely important.  It's critical to know that something does not work, and to move on from there.

(3) We have one family, in particular, whose child has a very rare chromosome disorder.  They have given thousands to NORD for research, and we did find some great researchers.  One researcher -- probably one of the best in her field of chromosome abnormalities, produced a "mouse model" to further study the disorder.
However, we were unable to find a topnotch researcher the last time we posted their grant (last year) -- because chromosomes can't be fixed (think "Down's  syndrome, which is a chromosome disorder--there is an extra pair of chromosomes that cannot be "removed") and there are very few researchers interested in conducting research on these rare chromosomal abnormalities that can't be treated or cured.
That family is still sending us funding - - they are hoping to collect enough funds to possibly start a registry and a clinic for that disorder, with NORD's help.

(4) Regarding anonymity of the donors -- this anonymity actually goes without saying! No one -- Absolutely no one aside from NORD's accounting department, me--and possibly our organization membership director (she would want to invite your group to become a NORD member org ---that would be the reason for her knowing about any group donations -- you can feel 100% free to not do so!) would be advised about who is donating research funds.
You could inquire about the total amount in your fund (or any of the other funds) at any time.  That information is available to the public. But we could not advise any of you about the amount of individual donations to your fund.
To donate online, you obviously need to supply your name and credit card number -- this information is held in the strictest confidence by our accounting department. If you wanted to mail in a check and have it be anonymous , you'd need to send a brief note advising that the check is for the POIS research fund, and that the donation is anonymous (a bank check would do that).
As a non-profit organization, we always send an acknowledgment to the donor for his/her tax records (a note via postal mail) -- but if you don't want to receive that acknowledgment - - just advise in the note.

(5) Once the money is received at NORD for your fund, it is not returned (at least, this has never happened in the past, nor has there ever been a request for this that I'm aware of).  So you must give this question careful consideration. (There may be a chance that the funds could be returned, but I've never seen it done, so would rather err on the side of caution here.)  Assume the answer to be, "No."

Daveman-- the RFP would definitely need to meet the group's approval, but -- the money would stay at NORD.  We would make that RFP work for you.
(I HATE to advise that the money stays at NORD, but it is true as far as I know--and I don't want to steer any of you incorrectly.)

Vandomelen and Vincent Marcus --  I think you both mentioned funding Dr. Waldinger's directly (aside from also funding NORD). 
I am going out on a limb here, as Dr. Waldinger may read these posts. This comment of mine is not about HIM, so is not meant to offend him or anyone -- but it is about funding individual researchers and precautions.   
Make sure you have a contract signed by the researcher, in which you spell out exactly how the funds are to be spent. Also, the funding should be given out as needed (not all at once), with reports back to you about expenses, progress, etc.  Those expense reports need to be formally provided by the researcher's medical insititution.
Just passing some words of wisdom to all of you -- based on experience. :-)

If I've missed anyone--don't take it personally!  Ask the question again.

Title: Re: Funding a POIS research grant
Post by: Daveman on June 02, 2011, 09:57:48 AM
Regarding the last comments to Van and VM, these are requisits that any professional research grant administrator would do I assume.

If we do ANY separate research I feel that we would need a professional hghly trained commitee to run it.

This is part of the problem and why I prefer to see it through NORD (whoever the researcher is). The commitee that administers, needs to be both highly expert medically and very tuned in to the whole research environment. On top of that, the commitee NEEDs to be independant, not part of the same research facility.
Title: Re: Funding a POIS research grant
Post by: demografx on June 02, 2011, 11:05:45 AM
I won't waste words by reiterating Daveman's comments above.

Perfectly stated! I agree wholeheartedly.
Title: Re: Funding a POIS research grant
Post by: demografx on June 02, 2011, 01:09:40 PM


I'd like to pledge $1,000 towards research.


Thank you so much, Limejuice!!
Title: Re: Funding a POIS research grant
Post by: demografx on June 02, 2011, 01:24:53 PM
before opening an account have you read this.
http://www.rarediseases.org/medical-professionals/research-grants/policy

go to donating for rare disease research.
it pretty much says if account dosn't reach a certain amount after a certain amount of period, the money money will be transfered to a general account of something similar.
if this rule is not flexible May be we should tally it up first within us before starting an account.

CC, good point!
Title: Re: Funding a POIS research grant
Post by: biocentric on June 03, 2011, 03:20:32 AM
Speaking purely for myself, I would like most to see:

1) A repeat of Waldingers test but including non-POIS volunteers
- Ideally Dr.W could test 10+ non-poisers with the same procedure as his original 33 man one, i think this is unlikely though(?), will he want to disprove/prove his own study?
- A better idea could be to get a U.S based doctor who has already had a positive skinprick test done on a forum member. like Dr.Bewtra for example.
Get 10 Non-POIS and 10 POIS
or even better 20 Non-POIS and 20 POIS
They dont have to be equal as its the "percentage that test positive" thats important,
..But I feel if we only get non-POIS to compare with Waldingers original 33 man test then I can see us being in the same old position- doubting the results, wondering whether they are correct, comparing the different methods (the method will be different in some way), ratios etc..
Lets just do a new fair test comparing both NonPOIS and POIS under the SAME conditions.
Hopefully Dr Waldinger wont see this as a form of descent or backstabbing, its purely science!

Surely this wouldnt cost anything near $33k, its a couple of hours work for one/two allergist plus a bit of money for volunteers.
When advertising for non-POIS volunteers it should read recently a rare illness has been been linked to an allergy of a natural protein found in the body, we need volunteers that dont have this rare illness to prove they test negative, i.e male volunteers are needed for an allergy test
dont tell them about semen! until they are face to face with the doctor!

Maybe NORD can organise this test?

2)A couple of POISers to test out Monoclonal Antibody therapy
I know its new on the forum, but it does say its meant to "stop allergic attack dead in the tracks", sounds exciting.
Title: Re: Funding a POIS research grant
Post by: Daveman on June 03, 2011, 01:09:50 PM
Everybody, yet again Stefanie Putkowski from NORD comes through!!
Here is what she has to say about a research fund for POIS at NORD!


Congratualtions Everybody,
The fund is good to go -- it can be now be done online
POIS has formally been added to the list of research funds.  And someone has already made an anonymous donation!

FYI, go to: Research Donations (https://rarediseases.org/about/support/research-donations/fg_base_view_p3)

In the spot for "Research Fund," hit "Please Select a Research Fund."  It's an alphabetical drop down -- go to P and find your fund.



Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org
 
Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions
Title: Re: Funding a POIS research grant
Post by: Daveman on June 03, 2011, 01:20:44 PM
Remember everybody. We are not committed to any specific path of research yet. We will be allowed a back and forth interaction in the post evaluation of the research specification.

And from what I understand, someone very familiar with our cause will be responsible for first base drafts.... Stefanie!

Title: Re: Funding a POIS research grant
Post by: Vandemolen on June 03, 2011, 05:49:09 PM
Great! Maybe NORD can make it possible to donate money online from another country then the US. Now you can only choose from US States.
Title: Re: Funding a POIS research grant
Post by: Daveman on June 03, 2011, 07:56:18 PM
The data fields are necesary for tax deduction reasons, which probably don't hold for out of country donations.

One could try to donate, filling fields that don't correpond to their country with "whatever". Often you can get away with that, and when it doesn't matter for tax deduction, no problem.

Anyways, Stefanie can manage donatios personally for those that don't work with the internet form. You can PM her here.

Also I'm SURE she will respond here about this anyways.
Title: Re: Funding a POIS research grant
Post by: Ccconfucius on June 03, 2011, 09:14:35 PM
how do we know how much is in account, a meter will be cool.
Title: Re: Funding a POIS research grant
Post by: demografx on June 03, 2011, 10:30:38 PM

how do we know how much is in account, a meter will be cool.


Just ask.

Meanwhile, I donated a modest amount, online, to NORD-POIS today with my credit card.
https://rarediseases.org/about/support/research-donations/fg_base_view_p3
Title: Re: Funding a POIS research grant
Post by: Daveman on June 04, 2011, 08:32:01 AM
how do we know how much is in account, a meter will be cool.

Let me see what I can do. For now I'll out a total in the "news box".

The "news box" is visible in the expanded header, top right!

The little arrow to the left of the "Home" button, opens and closes the Header.

Title: Re: Funding a POIS research grant
Post by: Daveman on June 04, 2011, 09:19:26 AM
Just a note on the "online donation function" at NORD.

NORD had normally accepted donations for grants manually. The "online facility" is new. AND, Demo had a couple of small problems when he donated. But the IT department reacted VERY quickly to fix the problems (related to iPhone). There shouldn't be anymore. But we wanted to mention it just in case. If there is any problem whatsoever, drop a PM to Demo or I and we'll get immediate attention.

Also in answer to other concerns about international donations etc, I copy this note from Sefanie and NORD. She said:

I'll ask on Monday about international donations to NORD.  We receive them from all over the world, but I am not sure if they can come through the website because the money might need to be converted first to US dollars. I truly don't know if that's the case, or how that works -- but will find out and get right back to you.

Since we do receive funds from all over the world,  this is not an uncommon occurrence at NORD.

FYI, if the money needs to be converted to US dollars first, then I believe that the most economical and the easiest way to do this -- and probably the most anonymous -- is to purchase a postal money order through the local post office.  There will be a modest fee (as an example, it's around $4.00 in the US to send a postal money order from here to overseas).
.
Regarding the absolute anonymity, if someone wants their donations to be totally anonymous (meaning the ID is not even known to NORD), I think the postal money order route, mailed via postal mail, is the best and only choice. It's not a bad choice, by the way. It's a very good, safe choice--for anyone, in any circumstance.

Our website definitely won't accept charge card donations without all the required information. That is a given everywhere and not unique to NORD.  So, one can't do an online donation totally anonymously (anonymous to the point that NORD doesn't have the contact information of the person).  An anonymous postal money order sent via snail mail is the answer in that case.

What I said, or tried to say previously, about contacting me re: anonymity -- is related to not receiving an acknowledgement (a thank you) from NORD if a donation is made through the web site.

Thus, if someone feels that they would like to donate via the website, but doesn't want to be receiving an acknowledgment of the donation for the sake of anonymity at their end, they can feel free to contact me directly and I'll make sure nothing is ever sent.They don't need to tell me the amount of the donation, as this is kept confidential also (I have no need to know how much an individual donates).

We send these acknowledgments so that people (within the US) can use it for tax records, but we also send them simply as a "thank you" to everyone.

By the way, I learned today that we receive several anonymous donations yearly for various funds and for unknown reasons.  This is not a new concept for us.

Title: Re: Funding a POIS research grant
Post by: Habibou on June 04, 2011, 06:40:45 PM
This is an excellent thing to start now we have more specific researches to do !

I agree with Vandemolen, we should gather all POIS suffers to give an equal part since we are over 200 getting this condition. 100$ each would already be a lot, and for the others who are willing to give more, it would be possible !

Of course, we can't push anybody to give money for it... but according to me, it is intelligent money investment. Indeed, we try many things , sometimes more or less expensive, with a probability to cure of 1/N (N very high sometimes). With that, we would be sure, the money would build up a serious investigation for a real finding and a possible cure (more or less easy, depending on the case found). 100$ is the price of 30 minutes with a specialist (or even a lot more) who will tell us "sorry i can't do anything for you". Then those 100$ would be wasted !  Sorry if i am messy  ;D
Title: Re: Funding a POIS research grant
Post by: Daveman on June 04, 2011, 07:45:03 PM
Not at all. Perfectly clear.

I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.

Title: Re: Funding a POIS research grant
Post by: demografx on June 04, 2011, 09:24:36 PM
Not at all. Perfectly clear.

I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.


Reminds me when I got a get-well card after my open-heart surgery, it included a funny mention of my good deed in helping the surgeon get that "dream" hi-fi system for his den.  ;D
Title: Re: Funding a POIS research grant
Post by: demografx on June 04, 2011, 09:32:16 PM

NORD-POIS WILL BE THE NEXT BIG QUANTUM LEAP. So let's make it a good GREAT one!


mod-mod-edit :)
Title: Re: Funding a POIS research grant
Post by: demografx on June 04, 2011, 10:45:06 PM


What I said, or tried to say previously, about contacting me re: anonymity -- is related to not receiving an acknowledgement (a thank you) from NORD if a donation is made through the web site.




I received an email from Stefanie about confidentiality regarding NORD's acknowledgement to me about my website donation, and I said that I only wanted acknowledgement by email, not snail mail.

(If I said NO acknowledgement that would have been respected as well).

She double-checked with me to make sure that she understood exactly what I wanted before proceeding.

VERY reassuring!
Title: Re: Funding a POIS research grant
Post by: demografx on June 05, 2011, 01:37:29 PM

I just made a $100 donation on the NORD website to the POIS fund!


Animus, thank you !!
Title: Re: Funding a POIS research grant
Post by: Vandemolen on June 05, 2011, 04:26:22 PM
So if I understand it right this is the best way to send money to NORD from outside the US:
Put dollars in an envelope and send it through the post to NORD? But there is a change that the envelope doesn't reach NORD.
Title: Re: Funding a POIS research grant
Post by: Daveman on June 05, 2011, 04:45:20 PM
No way!  :D Money itself no.

You can buy a postal money order (in USD ) made out to NORD. Only NORD can cash it. Then put the money order in the mail.

Stefanie will be getting back on the details Monday or Tuesday. I imagine a cashier's cheque or straight bank transfer could work as well.

We'll have to get all the info. Like account numbers or names etc.

The first one will be the hardest. Once Stefanie has all the information, we'll make sure it's easily available and any others should be easier.

Title: Re: Funding a POIS research grant
Post by: Stef on June 06, 2011, 11:58:45 AM
Hi Everyone,

Regarding International Online Donations, this option is currently being worked out on our new web site and will be set up (hopefully sooner rather than later!). As you probably know, charge cards (i.e. Master Card, American Express, etc) will automatically convert your donation into US funds--which makes it easier for everyone involved.

For now, there are two options for international donations (this is not only for the research grant funds, but is also for ALL donations to NORD, so you are not alone!):

(1) You can send an email to Cindy Thayer (cthayer@rarediseases.org) in our accounting department. Cindy is completely trustworthy, keeps everything confidential, and will treat all donations with the utmost discretion (that she always uses). She'll let you know via email when the chage goes through.

In the email to her, you'll need to write:

Name
Address
Credit Card Number, Type of Credit Card, and Date of Expiration
Amount of Donation
Disease Fund  (POIS)



(2) You can send a postal money order, as described previously, with a brief note advising of the fund you're contributing to.  Because there is a fee to do this through the post office in your town, even though a relatively small fee, it is the other option.

My suggestion is to wait until the website can support online international donations, as that will be the easiest and most direct for you.  The most anonymous route is the postal money order.

I hope this helps, and I'll let you know when the international online donation issue with the new site is resolved.

I'm sorry for this inconvenience.  If I could fix it today, I would!  However, as demografx and Daveman know, it I tried to fix this, the entire website would most likely disintegrate! 
Title: Re: Funding a POIS research grant
Post by: demografx on June 06, 2011, 02:04:22 PM




I would be happy to donate $100 to begin with once the international donation page is up.


Green, thank you!!


Title: Re: Funding a POIS research grant
Post by: demografx on June 06, 2011, 03:05:31 PM



I will try in about a few days at the post office [to send in a NORD-POIS donation]. Thanks.


Vandemolen, thank you!!


Title: Re: Funding a POIS research grant
Post by: EDS on June 06, 2011, 06:49:10 PM
Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.

Come on everyone! Let's get this thing cranked up and beat this ghastly thing we call POIS!!
Title: Re: Funding a POIS research grant
Post by: demografx on June 06, 2011, 10:36:49 PM

Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.


EDS, thank you!!
Title: Re: Funding a POIS research grant
Post by: demografx on June 06, 2011, 10:40:37 PM







Come on everyone! Let's get this [NORD] thing cranked up and beat this ghastly thing we call POIS!!

http://rarediseases.org/about/support/research-donations/fg_base_view_p3



EDS, thank you for that!






Title: Re: NORD Research Grant
Post by: demografx on June 07, 2011, 01:56:01 PM

Where can I donate to The POIS Research Fund online?

Please donate here:
http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

Thank you!!!




Title: Re: NORD Research Grant
Post by: demografx on June 07, 2011, 11:48:27 PM


(http://rc.vc/forum/297%20-%20animated_gif%20applause.gif)

BIG THANKS to rock27 for extracting all emails from our POIS Survey Database. These names will be added to Martin88's work in progress of extracting usernames from this forum.

All names will be mailed a plea to donate to our NORD-POIS Research Fund!
Title: Re: NORD Research Grant
Post by: demografx on June 08, 2011, 09:20:26 AM


(http://rc.vc/forum/297%20-%20animated_gif%20applause.gif)

BIG THANKS to Martin88 for completing the extraction of 325 usernames from this forum today!

All names will be mailed a plea to donate to our NORD-POIS Research Fund!

Title: Re: NORD Research Grant
Post by: Stef on June 08, 2011, 01:07:31 PM
You men are AWESOME!!!!!!
Title: Re: NORD Research Grant
Post by: demografx on June 08, 2011, 06:55:23 PM
Thank you, Stefanie, the feeling is clearly mutual! :)
Title: Re: NORD Research Grant
Post by: demografx on June 08, 2011, 07:10:26 PM

Where can I donate to The POIS Research Fund online?

Please donate here:
http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

Thank you!!!




Title: Re: NORD Research Grant
Post by: rock27 on June 09, 2011, 02:38:45 PM
When the international credit card option is available on NORD, I will donate $ 1,000.

Title: Re: NORD Research Grant
Post by: demografx on June 09, 2011, 05:19:54 PM

When the international credit card option is available on NORD, I will donate $ 1,000.


Rock, thank you!!
Title: Re: NORD Research Grant
Post by: demografx on June 10, 2011, 02:48:51 PM

NORD-POIS International Option


The research fund online donation site can now accept international donations.  NORD received two today (not POIS) -- one from London, the other from Australia.

Go to:  
http://rarediseases.org/about/support/research-donations

Write street address, city, and country in "Address 1"


Click the drop down for State, and the word International comes up -- click that.

The rest is self-explanatory.

THANK YOU, STEFANIE!
Title: Re: NORD Research Grant
Post by: demografx on June 13, 2011, 02:14:02 PM

Hey brave souls! [;D]

Rock27 and Martin88 both had problems on the international donations page at N O R D over the weekend, even though "N O R D  IT" had indicated that it was tested and working.

Daveman and I have about 40 EMails each back and forth with people at N O R D, from the site programmer all the way up to the CEO. At 10:01, we had set a limit of 10:00, we received a message that the system was now operational.

Stefanie is sick at home (over this I might add). Daveman didn't get to sleep until about 05:30 AM!
I had to go take a walk to "settle down", so I send this note as I walk! (iphone)

Please, any more problems, (let's hope not) report them immediately via PM please. Let's hope that this time it's true and the system is functional.

Title: Re: NORD Research Grant
Post by: Habibou on June 13, 2011, 05:04:26 PM
As soon as the international way of donation is efficient, I want to start with a 100$ donation and then see how the 33 500 $ are reached to put more money in the bank  ;D
Title: Re: NORD Research Grant
Post by: demografx on June 13, 2011, 07:54:03 PM

As soon as the international way of donation is efficient, I want to start with a 100$ donation and then see how the 33 500 $ are reached to put more money in the bank   ;D


Habibou, thank you!!

Title: Re: NORD Research Grant
Post by: demografx on June 13, 2011, 09:03:18 PM
Just a note on the international donation facility at NORD!

Well I have to say, they know who we are!! This facility was new, and had a few last kinks, although more than anything it was erring on the safe side. But all's well now, they say.

There should be no more problems, but IF there are, any error would be tagged with a special error log code, which helps them follow up. Should you have problems, report that number to the webmaster and they will get you straightened away. Follow up with a PM to us.

Daveman should be posting a new total tomorrow.
Title: Re: NORD Research Grant
Post by: B_Daniel on June 14, 2011, 12:17:08 AM

BIG THANKS to rock27 for extracting all emails from our POIS Survey Database. These names will be added to Martin88's work in progress of extracting usernames from this forum.

All names will be mailed a plea to donate to our NORD-POIS Research Fund!


rock 27 and Martin88 - I just wanted to second this comment and point out how crucial of a task that was!

Personally, I'm excited for Daveman to update the research fund total tomorrow.  that's def important to do before we PM all these members - so we display a decent sized pot of money and prove the viability of this research grant goal of ours.   
Title: Re: NORD Research Grant
Post by: demografx on June 17, 2011, 01:27:22 PM






I'd like to say I intend to donate to this fund and that it seems to be an incredibly worthy investment of money.



Counterpoints, thank you for the pledge AND the sentiment!!





Title: Re: NORD Research Grant
Post by: demografx on June 17, 2011, 09:43:00 PM



I gave 100$ for the POIS fund.


Martin, thank you!!


Title: Re: NORD Research Grant
Post by: demografx on June 21, 2011, 11:20:38 PM




I just made a donation to NORD. Keep up the good work everyone!


Hoping, thank you !!


Title: Let's Start Finding A Cure for POIS - - NOW!
Post by: Daveman on June 23, 2011, 08:16:32 AM
Let's Start Finding A Cure for POIS - - NOW!

(400+ PM's and emails will go out Monday to everyone who registered or surveyed with us at both forums. Since 2007)

Dear Friends and Fellow POIS Sufferers,

 

On February 18, 2007 the first post about our struggle with POIS appeared on The Naked Science Forum, an online science discussion forum that includes science, medicine and technology news.  It was John21 (now a Senior Member on NSF) who took that first brave leap into the online world of POIS.  Others describing their unusual and very disturbing symptoms of POIS (a term described by a Dutch researcher in 2002), immediately followed.  And so, the first POIS forum was born.

 

Since that first post, 580 pages of posts detailing the POIS experience have been filled.  We have documented our symptoms, our interactions with the medical profession (often very demoralizing and disappointing), medications and/or supplements that either made us feel better, albeit temporarily, or made us feel worse.  So besides supporting each other while in the throes of a very isolating disorder, we collected specific and intricate data, often of a very personal nature, hoping that one day we’ll help find a cure for this dreadful condition.

 

Some of us went as far as to make lab rats of ourselves, trying concoctions and physician-prescribed medications that did us no good.

 

And we’ve also relied upon humor!  Yes -- humor helps invaluably when things seemed so desperate.

 

As time passed, we realized the need for a forum of our very own, where ideas could be documented by subject, and where the forum was ours and ours alone.  Daveman, another Senior Member, painstakingly designed this new forum, www.POISCenter.com .  While it is still a work in progress, it is the one and only online forum specifically dedicated to supporting others with POIS.

 

As most of you know, there is precious little research on POIS.

 

We, as a group, are going to change that!!

 

We have affiliated ourselves with the National Organization for Rare Disorders (NORD), www.rarediseases.org , a non-profit organization that is working very closely with us to find the world's best medical/scientific minds help us find the cause, treatments, and a  cure for POIS. And by "best" I mean not only brilliant academic researchers with sterling academic credentials, but who also posses two critical ingredients: Passion and Compassion. On Tuesday, June 28, 2011, you can view our group’s link on the NORD site at http://rarediseases.org/rare-disease-information/rare-diseases/viewIndex?tab=P&query_start=51

 

The starting point is for us to fund a POIS Research Grant, with NORD's help. Please read this very brief summary of the research program and our growing determination to do what it takes to fund our first research grant -- http://poiscenter.com/forums/index.php?topic=125.0

 

 

In only two weeks we have already collected more than $2,250.00.  But we need a total of  $33,500.  This is where you come in.

 

The rest of the science world will eventually take POIS dead-seriously, but it's up to US to first put the wheels in motion and show them solid, concrete, medical, peer-reviewed evidence of our disorder.

 

That is the intent of the Research Grant program, and of the funding of our first POIS grant.

 

So, PLEASE...donate what you can to our research grant fund!

 

Please donate here:

http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

 

The past 35-plus years of our other fine moderator's life, "Demografx" have been filled with the agony of POIS. But YOU have made it all meaningful for him and us  by making us "POIS friends" and allowing us to help you in our modest efforts to our cause.

 

And--if he hadn't listened to YOUR advice on our precious forums, he would most certainly not have experienced a miraculous 80% POIS-relief for his specific symptoms! As Moderator, he received so much in return from the forum members! : -)

 

Please jump on the bandwagon with us, and donate whatever you are able to.  No donation is too small!

 

Together we are going to cure POIS!!!

 

Best wishes and best regards, everyone!

Yours,

daveman
 
Title: Re: NORD Research Grant
Post by: demografx on June 25, 2011, 11:36:15 PM


I donated $100 towards the NORD research fund.


John, our first and longest-standing member, thank you very much !!
Title: Re: NORD Research Grant
Post by: Daveman on June 26, 2011, 08:06:22 PM
We are officially in the NORD (National Organization for Rare Disorders) database. The link to our entry is http://www.rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail

The presence of our data here will be very helpful on various levels, including greater exposure to potential researchers and donors alike.

Also, we are aware of the difficulty involved in finding our forums. With this entry, because of the high number of visits that NORD receives it will help capture even more new members, who are most important to us. Each one will be one step closer to real relief.

Title: Re: NORD Research Grant
Post by: demografx on June 27, 2011, 12:13:20 AM
Hurray, Daveman!

Bruce Willis can't hold a candle to you!

Congrats also to all of us!

We deserve it!
Title: Re: NORD Research Grant
Post by: Habibou on July 11, 2011, 10:36:22 AM
"Thanks for your input.

Thank you for your donation!  Your generosity will help us provide vital programs and services for the nearly 30 million Americans affected by rare diseases."

I just made a 100,00 $ donation to the NORD for POIS  :)   
Title: Re: NORD Research Grant
Post by: demografx on July 11, 2011, 04:14:54 PM



[From NORD:]"Thanks for your input.

Thank you for your donation!  Your generosity will help us provide vital programs and services for the nearly 30 million Americans affected by rare diseases."

I just made a $100.00 donation to NORD for POIS    :)



Habibou, thank you very much!!!


Title: Re: NORD Research Grant
Post by: Habibou on July 13, 2011, 12:05:17 PM
It is normal Demo  :) I wish we all could give that little to make a real difference at the end ! And it seems to rise anyways.
Congratulations for the POIS donation mail ! It is sure it will help  :)
Title: Re: NORD Research Grant
Post by: demografx on July 13, 2011, 11:41:49 PM
POIS Donor Database System (PDDS)

You may have just noticed an email appeal in your inbox from us.

This is the culmination - AND beginning - of a database marketing system that has been months in the making, and has finally been LAUNCHED!

The database includes 326 known POIS sufferers, going back as far as 2007, to the beginnings of POIS forums. But it also includes survey respondents from Counterpoints' research survey, and members of this forum as well as the Naked Science Forum.

Apart from my modest contribution, let's all give a big, warm congratulations to The PDDS Team:

Daveman

Martin88

rock27

nordnurse (a/k/a Stefanie from NORD)

This is a major event for us, as we now have a database system in place as sophisticated as any MAJOR fundraiser I've ever worked with, such as Amnesty International, CARE, and March of DIMES.

This is an ongoing effort and will include donor campaigns, newsletters, and much more, so stay tuned!


(http://i745.photobucket.com/albums/xx97/JML9999/animated_audience_Applause.gif)


Title: Re: NORD Research Grant
Post by: B_Daniel on July 14, 2011, 12:31:10 AM
The email that went out to everyone was superb!  Fantastic work everyone!  Let's now hope all 300 members give something  :D 
Title: Re: NORD Research Grant
Post by: Stef on July 14, 2011, 10:20:52 AM
Hello All,

There is one note of major clarification needed regarding the post by Demografx about the email appeal.

"Apart from my modest contribution, let's all give a big, warm congratulations to The PDDS Team..."

FYI, there was nothing MODEST about Demo's contibution. not even slightly modest about his contribution.  He was full steam ahead on this -- totally involved and a major driving force!

That's Demografx -- never wishing to take the limelight and always boosting up the others.

We won't let him get away with it!!! :)
Title: Re: NORD Research Grant
Post by: demografx on July 14, 2011, 02:09:53 PM

nordnurse, you're making me blush, but THANK YOU !!
Title: Re: NORD Research Grant
Post by: demografx on July 19, 2011, 11:54:00 PM




You can put me down to pledge $500.


Green, thank you!!!



Title: Re: NORD Research Grant
Post by: Habibou on July 25, 2011, 05:02:34 PM
Is there a possibility to get in touch with Dr Waldinger s POIS patients? to get them into the forum and also to warn them about the NORD funds.
Title: Re: NORD Research Grant
Post by: omen on July 30, 2011, 11:29:42 AM
i wish some billionaire in this world already has POIS and he reads this forum and donates all the money needed for the NORD research in 1 shot....
Title: Re: NORD Research Grant
Post by: B_Daniel on July 31, 2011, 12:18:57 AM
i wish some billionaire in this world already has POIS and he reads this forum and donates all the money needed for the NORD research in 1 shot....

Haha that would be great!  But there are about 1,000 billionaires in the world.  So what's that?  About .00001% if my math is right.  And then about 1% or less of the population has POIS.  So the odds of someone with pois ALSO being a billionaire... not so high  :P.  

Nope, I think we're gonna have to all pull together and fund this research ourselves.  The good news is that the goal is very attainable!  With everyone giving what they can, we can totally do this!
Title: Re: NORD Research Grant
Post by: B_Daniel on July 31, 2011, 12:26:12 AM
So the pace of donations has been slowing lately.   To combat this, daveman and jivetalk came up with the idea of enticing ppl to donate through a gift for donating.  What do ya'll think of the idea of a Dr. Waldinger signed copy of his Jan 2011 Published Study for anyone making a donation of $100 and up?

Just to say it, the potential issues with this are:
1.) Would Dr. W. be willing to do that for us?   
2.) How would we know who donated - people telling me via PM?  That works, just not very efficiently.
Title: Re: NORD Research Grant
Post by: Daveman on July 31, 2011, 08:27:56 AM
Something like that could be interesting B_D!

I'm sure the details could be worked out.

I have a feeling that a Dr. Waldinger signature is out, but there could be many other interesting themes that could interest our donors. Maybe we could get Demo to lend his signature!

As mentioned earlier, no-one is really going to want to explain the meaning of many of the ideas we could put on a T-Shirt. But we might find something like "I Support Great Sex", or "Big O, V2.0".

Anybody have any ideas?
Title: Re: NORD Research Grant
Post by: B_Daniel on August 01, 2011, 01:19:57 AM
As mentioned earlier, no-one is really going to want to explain the meaning of many of the ideas we could put on a T-Shirt. But we might find something like "I Support Great Sex", or "Big O, V2.0".

Anybody have any ideas?


I like the ideas!  I'm on a pois day so I won't be contributing creatively for a few days  :(
Title: Re: NORD Research Grant
Post by: demografx on August 09, 2011, 12:09:43 AM

As mentioned earlier, no-one is really going to want to explain the meaning of many of the ideas we could put on a T-Shirt. But we might find something like "I Support Great Sex", or "Big O, V2.0".

Anybody have any ideas?



I like the ideas!  I'm on a pois day so I won't be contributing creatively for a few days  :(




I'm in POIS too, so I could only come up with this idea for a T-shirt:



(http://i111.photobucket.com/albums/n159/crebello/Niacin%20Flush/NFsticker.jpg)
Title: Re: NORD Research Grant
Post by: demografx on August 09, 2011, 04:41:33 PM

i wish some billionaire in this world already has POIS and he reads this forum and donates all the money needed for the NORD research in 1 shot....


Haha that would be great!  But there are about 1,000 billionaires in the world.  So what's that?  About .00001% if my math is right.  And then about 1% or less of the population has POIS.  So the odds of someone with pois ALSO being a billionaire... not so high  :P.  

Nope, I think we're gonna have to all pull together and fund this research ourselves.  The good news is that the goal is very attainable!  With everyone giving what they can, we can totally do this!



Guys! You're shooting too high!!

We don't need a DonaldWarrenTrumpGatesBillBuffett!!!!

ALL WE NEED IS ONE AFFLUENT POISer WHO CAN WRITE A CHECK FOR $30,000!!!!!

So..................we only need - NOT a billionaire - - - - but a "$100,000aire" with POIS!!!!!

About 15% of all US households earn over $100,000 per year.

That's roughly 15 MILLION US MEN EARNING OVER $100,000 PER YEAR.

IF 1% HAVE POIS................

THAT REPRESENTS 150,000 AFFLUENT POISERS IN THE US ALONE!!!

OK YOU SAY IT'S ONLY 1/2 OF 1% WITH POIS?

THAT STILL REPRESENTS 75,000 AFFLUENT POISers  OUT THERE WHO COULD WRITE THAT CHECK!!!!

LET'S GO FIND 'EM!!!!!!!!!!!

BUT.....................to hedge our bet, let's do what B_Daniel suggests and let's bet on ourselves first!!! :) :) :) :) :)
Title: Re: NORD Research Grant
Post by: B_Daniel on August 14, 2011, 01:58:05 PM

(http://i111.photobucket.com/albums/n159/crebello/Niacin%20Flush/NFsticker.jpg)

One day we're gonna Flush POIS!  We should coin that "the royal flush".
Title: Re: NORD Research Grant
Post by: Habibou on August 23, 2011, 01:35:04 PM
I suggest something for the NS forum and POIS center : we could have directly a link of the NORD research donation on the front page on the top (something we can see well) with a button "Donate Now  :)".

 I have talked to some persons who comes just sometimes on the forum and who did not know about the donation... :s And since they learnt it, they are very positive for a future donation ! I was just a suggestion, let me know  :)
Title: Re: NORD Research Grant
Post by: Daveman on August 23, 2011, 05:01:28 PM
We can't change the code on NSF, but I'll look into puting a button here.
Title: Re: NORD Research Grant
Post by: Habibou on August 28, 2011, 08:22:01 AM
Yes, I thought so for the NSF but It could be great a button on this forum at least !  :)
Title: Re: NORD Research Grant
Post by: mellivora on September 23, 2011, 06:14:53 AM
I had a simple thought. Its obvious really but quite timely given I've also just read on here the latest ideas on raising cash for the NORD grant.

A traditional way to raise funds for a cause might involve a sponsored run or bike ride or some such where you get family and friends to sponsor you to complete such an event. As has been discussed before, POIS has the major drawback of being an awkward thing to talk to family and friends about which makes such sponsored fundraising difficult for us.

However, in reality, all one would need to do is to name the National Organisation of Rare Disorders (NORD) as the organisation one is raising money for with an outline of what they do, helping largely unheard people find relief for little known debilitating illnesses. I think that could be as unquestionably acceptable to people as say raising money for a cancer charity, children's charity or wildlife charity. You could just say you wanted to do a sponsored event and when you heard about NORD it somehow seemed a worthy cause. It should be possible to then ensure that this money is channelled in to the NORD POIS fund when it is received. I don't think that is too deceptive. I'm sure friends and family would donate to a POIS fund anyway if they truly knew our suffering and at the end of the dsay the money is indeed going toward a NORD project.

Bizarrely this has only just occurred to me so I haven't taken action but I wanted to throw it out there in case it inspires anyone who already has fundraising ideas,
Title: Re: NORD Research Grant
Post by: Daveman on September 23, 2011, 07:08:54 AM
Yes, it's one of our big problems.

Something like that can be done for some paralyzing disease or terrible skin disorder, but our case is difficult.

I think the problem, even doing it in the name of NORD, without mentioning what POIS is, is that those who participate are doing it for the one affected first, and then for the group of sufferers. If it's a child they know, with big suffering eyes, or even an adult with some debilitating and visibly crippling disorder, there's no problem.

But we don't have a visibly crippling disorder, can't tell them what it is. They can't see our suffering enough to incentivate them to squeeze that money out of their pocket.

Imagine, if WE ourselves have such problem to make the sacrifice...

On the other hand though, we only need $300 from 100 donors. If some of us wanted to try a small bycicle race, it wouldn't have to be all that big to raise $300. Or a local yard sale or a winter ski competition.....
Title: Re: NORD Research Grant
Post by: mellivora on September 23, 2011, 07:43:51 AM
I've just looked on the NORD website under Rare Disease Information>Rare Disease Database

I noticed that POIS isn't listed there. Is this only a database for conditions that already have a grant? Or does someone at NORD need to write a formal description based on the research papers currently available (by Waldinger, Goldmeier et al)?
Title: Re: NORD Research Grant
Post by: Stef on September 23, 2011, 11:02:33 AM
Hi Mellivora,

I just read your post and wanted to reply, rather than leaving it only for Daveman or Demografx to explain.

NORD's Rare Disease Database contains a little over 1200 rare disease reports.  This is due simply to the relatively small editorial staff that we have, as a non-profit organization.  Currently we only list the rare disorders for which we have a report to offer. Getting these reports written properly, checked by expert researchers, etc, is a major procedure.

(FYI, if someone were to call us for information on POIS, or any other non-listed rare disorder, we'd provide information from reliable databases.)

The SMF POIS forum is listed on our organizational database, http://www.rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.

For those of you who may not be aware, POIS is officially considered a rare disorder in the USA, and is listed on the database of the NIH (National Institutes for Health) Office of Rare Diseases Research -- http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx.  While they don't provide much information on the almost 7,000 rare disorders that they list, just getting listed there is an important milestone.

Demo and Daveman are responsible for getting POIS listed on that US government site.

If NORD had a reputable and up-to-date researcher to obtain a POIS report from, we would definitely approach him/her to help us write it and to review it for scientific accuracy.  That won't happen until the basic scientific research has been done (i.e. a research grant has been awarded).

I hope that sufficiently explains why there's no POIS report yet on our database.
Title: Re: NORD Research Grant
Post by: mellivora on September 23, 2011, 12:31:00 PM
Hi Nordnurse,
Thanks for clearing that up. I was just surprised to see that POIS was on NORD's funding page but not on the information page. Make no mistake I'm very grateful for the existence of NORD, the help you have given us thus far and the huge potential for the future. Do you have any information about whether POIS is officially listed in the UK? I know there are UK researchers (Dr Goldmeier's team) working on it but I wonder if its on a national database. I know a couple of years ago, before the NIH listing, my GP coudn't find any reference on his database that supposedly covered every officially recognised illness. If its still not listed here, I wonder if there are steps I could take to get it listed in the same way Demo and Daveman did for the USA. I guess I could check with Dr Goldmeier next I see him.
Thanks again.
Title: Re: NORD Research Grant
Post by: Habibou on September 23, 2011, 02:21:04 PM
Perhaps, we could ask the phone number of every suffers (in private messages) when they have to subscribe  to the forum +  for the ones already there  ! So that, we could contact them directly to let them know about the Nord research program and donation...and it stays confidential.
I know it would be long, but it was just an idea  :)
Title: Re: NORD Research Grant
Post by: Stef on September 23, 2011, 06:19:13 PM
Hi Mellivora,

I don't believe that POIS is listed yet in the UK's rare disease database, and in all honesty, I am not sure if the UK specifically has its own formal list.  They may, but I'm not sure.

There is an excellent international/European database called Orphanet (www.orpha.net (http://www.orpha.net)) that NORD relies upon often.  I believe that they would be the group to contact about getting POIS listed formally.  They have a specific UK page, and also a general page that lists and provides information for rare disorders that are recognized in the European Union and the UK.

Here's the general link to their UK page -- http://www.orpha.net/national/GB-EN/index/team-contact/ (http://www.orpha.net/national/GB-EN/index/team-contact/).  They provide this UK email address as a contact for potentially getting a disorder listed -- contact@ophanet.co.uk (http://contact@ophanet.co.uk).

Also, just FYI,  here's the link to Orphanet's alphabetical listing of official rare ("orphan") diseases throughout the European Union and the UK --
http://www.orpha.net/consor/cgi-bin/Disease_Search_List.php?lng=EN&TAG=A (http://www.orpha.net/consor/cgi-bin/Disease_Search_List.php?lng=EN&TAG=A).

It will take at least one email from you and/or anyone else from the forum who reside in the UK to make this happen.

When Demografx and Daveman contacted the NIH in the US, they sent an email asking how to get POIS officially listed, and also attached Dr. Waldinger's two papers from 2011 as back-up.  The contact at NIH found, on her own and at her own initiative, some other studies -- I believe one was by Dr. Goldmeier.  It was these preliminary studies, and knowing that there was a specific organization (http://poiscenter.com) that convinced them to list POIS officially.  It's listed as Post Orgasmic Illness Syndrome (not POIS) at NIH.

While NORD has no influence over what disorders get listed at NIH or at Orphanet, you should feel free to mention that NORD suggested that you contact them.  It's a small world in the rare disease community and we all know and respect each other.

There is strength in numbers when contacting these types of national organizations -- perhaps other forum members from the UK would want to sign the email along with you.

It would also be helpful for other international forum members to contact Orphanet about getting officially listed. At the bottom of their homepage -- http://www.orpha.net/consor/cgi-bin/index.php?lng=EN (http://www.orpha.net/consor/cgi-bin/index.php?lng=EN) -- there's a list of participating countries with contact information.  This link is their site in English, but it is also translated into five or six other languages.

Good luck with this, and I hope you get listed!! Ophanet is a highly-respected database.



Hi Nordnurse,
Thanks for clearing that up. I was just surprised to see that POIS was on NORD's funding page but not on the information page. Make no mistake I'm very grateful for the existence of NORD, the help you have given us thus far and the huge potential for the future. Do you have any information about whether POIS is officially listed in the UK? I know there are UK researchers (Dr Goldmeier's team) working on it but I wonder if its on a national database. I know a couple of years ago, before the NIH listing, my GP coudn't find any reference on his database that supposedly covered every officially recognised illness. If its still not listed here, I wonder if there are steps I could take to get it listed in the same way Demo and Daveman did for the USA. I guess I could check with Dr Goldmeier next I see him.
Thanks again.
Title: Re: NORD Research Grant
Post by: mellivora on September 24, 2011, 05:07:51 AM
Thanks nordnurse,
This is great information. I'll get on it.
Title: Re: NORD Research Grant
Post by: mellivora on September 26, 2011, 09:55:25 AM

Good luck with this, and I hope you get listed!! Ophanet is a highly-respected database.


I have written to Orphanet today asking for POIS to be listed. I attached to my email the 3 papers by Dr Waldinger, the one by Dr Ashby and Dr Goldmeier and the Nature Review by Dr Farley. I also mentioned NORD, the NIH database listing, sent the address of both POIS forums and gave them contact details for Dr Waldinger and Dr Goldmeier.  I'll post an update here as and when there's any progress.
Title: Re: NORD Research Grant
Post by: Daveman on September 26, 2011, 11:21:06 AM
Excellent mellivora,

If we can help with follow up let us know!

Somewhere the right people will see us!
Title: Re: NORD Research Grant
Post by: Willem on September 26, 2011, 12:07:34 PM
Way to go Mellivora!  That's great.
Title: Re: NORD Research Grant
Post by: mellivora on September 26, 2011, 05:20:11 PM
I received a quick reply from Orphanet. Our request to be listed in their database has been forwarded to their experts in rare diseases. There are many validation steps in the process so I've been told it could take a few months for them to reach a decision on the listing. (Indeed it took a few months for POIS to be included on the National Institute of Health's Office of Rare Diseases Research list in the USA). A big thanks from all of us should go to nordnurse for her advice in getting this process underway.
Title: Re: NORD Research Grant
Post by: Ccconfucius on September 26, 2011, 10:31:36 PM
NICE
Title: Re: NORD Research Grant
Post by: Stef on September 27, 2011, 01:04:50 PM
Sounds perfect, Mel.

Also, thank you for sharing the contents of your original email to Orphanet with me (you might have shared with with Demografx and Daveman also -- don't recall off-hand). It was written beautifully and very convincingly.

Just to repeat to your fellow forum members:

"It would also be helpful for other international forum members to contact Orphanet about getting officially listed. At the bottom of their homepage -- http://www.orpha.net/consor/cgi-bin/index.php?lng=EN -- there's a list of participating countries with contact information.  This link is their site in English, but it is also translated into five or six other languages."

The more contacts made, the stronger the chances of getting officially listed on this European database. 


Good luck with this, and I hope you get listed!! Ophanet is a highly-respected database.


I have written to Orphanet today asking for POIS to be listed. I attached to my email the 3 papers by Dr Waldinger, the one by Dr Ashby and Dr Goldmeier and the Nature Review by Dr Farley. I also mentioned NORD, the NIH database listing, sent the address of both POIS forums and gave them contact details for Dr Waldinger and Dr Goldmeier.  I'll post an update here as and when there's any progress.
Title: Re: NORD Research Grant
Post by: demografx on January 01, 2012, 11:44:07 PM



OUR POIS MEDICAL RESEARCH FUND




(http://2.bp.blogspot.com/-97S38NBitbQ/TfP9z6JZscI/AAAAAAAABa8/R1NqyJOA2rk/s1600/donate.jpg)We've got to start somewhere!
What is the alternative?

Click here to Donate Now! (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)



$mall or large$ - it's ALL important, crucial, and needed!



*******************************************************************************



(http://bloximages.newyork1.vip.townnews.com/stltoday.com/content/tncms/assets/v3/editorial/a/1e/a1effc74-4c29-11e0-8a3b-00127992bc8b/4d7a993cabe18.image.jpg) Together we can figure out The POIS Puzzle!!


"Hey, what's all this fuss about POIS Fund-donating????"


Click Here to learn more about how YOU can help find YOUR cure for POIS:





 (http://poiscenter.com/forums/index.php?topic=125.0)
Title: Re: NORD Research Grant
Post by: demografx on January 01, 2012, 11:58:31 PM




POIS Medical Research Fund Total:  $4,730.00

($21,430 including pledges! Pledge now if you can't give now!)

AND RISING.


***********************************************

(http://i858.photobucket.com/albums/ab143/demografx/photo-6.gif)


Great going, guys!!!


*************************************************

                 (http://www.allfreelogo.com/images/vector-thumb/dollar-sign-clipart-profits-up-prev1175393776ezKR76.jpg)


GOAL: $33,500.00.       Let's do this in 2012!!
Title: Re: NORD Research Grant
Post by: mellivora on January 10, 2012, 10:07:49 AM
Hi all,

As I posted on this thread a few months ago, encouraged by nordnurse I wrote to Orphanet, the European database of rare diseases in an effort to get POIS included in their database. I've made several follow-ups since then and today we finally have some good news!!

Orphanet now list POIS on their website!!! Daveman and Demo got us listed in the National Institutes for Health Office of Rare Diseases Research database in the U.S. and now we have similar recognition in Europe through Orphanet. Hopefully this will prove a great step in getting POIS to be more acknowledged and recognised by medical professionals and helps give us more credibility than ever.

The listing at this stage is not a huge amount more than the name of our condition. In time, a summary and more details of our condition should appear on the database. Here is a quote from the email I received from Orphanet:

"The summary addition is a complicated process due to the many accuracy controls and it will take time, however, the addition of POIS on Orphanet is the most important part."

The orphanet listing can be seen here:
http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple

I'd like to emphasise that this would not have happened were it not for the advice and encouragement I received from nordnurse. It probably wouldn't have come about if Daveman and Demo hadn't taken the initiative and got us listed in the U.S. either as its that that set me thinking about European databases. And of course it wouldn't have happened without our forums! Our listing on Orphanet is further proof that everyone here can make a difference.
Title: Re: NORD Research Grant
Post by: mellivora on January 10, 2012, 10:24:22 AM
It's interesting in the Orphanet listing that they list 3 "expert centres" in Germany under health care resources for this disease. It could be that these represent some of the people they consulted in verifying the existence of POIS, I'm not sure. It might be worth our while knowing more about this and I'll ask. I notice 'patient organisations' doesn't list our forums at present. I certainly made them aware of our forums in my original letter and I'll query this at some point.

Ah, just found this info about "expert centres"
http://www.orpha.net/consor/cgi-bin/Clinics.php?lng=EN
Title: Re: NORD Research Grant
Post by: Daveman on January 10, 2012, 11:23:44 AM
It's interesting in the Orphanet listing that they list 3 "expert centres" in Germany under health care resources for this disease. It could be that these represent some of the people they consulted in verifying the existence of POIS, I'm not sure. It might be worth our while knowing more about this and I'll ask. I notice 'patient organisations' doesn't list our forums at present. I certainly made them aware of our forums in my original letter and I'll query this at some point.

Ah, just found this info about "expert centres"
http://www.orpha.net/consor/cgi-bin/Clinics.php?lng=EN

Thank you very much Mellivora. With people like you we have much more chance to overcome this condition.

It's not going to go away by itself!

I looked at the three "expert centers" and it looks like they treat in the "area", urology for instance, but I didn't see anything specific about POIS.

We'll have to work at updating our information there, but the biggest step has been made.

Thanks again.

Title: Re: NORD Research Grant
Post by: Stef on January 10, 2012, 12:16:18 PM
Mellivora,

WONDERFUL, OUTSTANDING NEWS!!!!!!

YOU are such a terrific asset to your group!! 

ORPHANET is the big leagues database for rare disorders in Europe and the UK.  We rely upon this database frequently.

Congratulations on a job terrifically done!

(I wish I knew how to insert an applause gif!!)

Stefanie
aka "nordnurse"
Title: Re: NORD Research Grant
Post by: demografx on January 12, 2012, 04:18:12 PM

(http://gifsoup.com/webroot/animatedgifs/754962_o.gif)


             As most everyone knows by now, a wonderful anononymous POIS donor found his way to us and has committed! - not only pledged - $500/month - each and every month! - to the Research Fund!

Thank you for this most generous, courageous, and magnificent Ongoing Donation to our future!

daveman
demografx



Title: Re: NORD Research Grant
Post by: demografx on January 21, 2012, 11:38:51 AM

I don't want to wait until late 2013 or 2014 before we can get dedicated (NORD-funded) POIS research under way. At the moment, that is the best we are heading for. 
We've got 2 months to get to our NORD target this year and save ourselves from waiting this long.

We've had some very generous donations recently but some of these are to be made over a period of months. I'm certainly no less grateful to the donors for this fact but it does mean the current NORD pledge tally can be misleading as it uses the total that will be donated by 2013, not by March this year. We are still currently not in a good position to make the March deadline this year. To me it looks like we're half way at best.

After we reach our $33500 target, it'll likely be some months before a researcher is appointed to work on POIS through NORD. It may be some time after this that work finally begins. I believe I'm right in saying that we really need to make the March 2012 deadline (2 months time) if we're going to see any benefits from NORD funded research within the next two years. There isn't a quick fix. But it'll be quicker if we begin now. Also, things will cost more in years to come. $33500 might not be the minimum required in future years, it might be more.

 We have some things that help some of us (eg. Niacin, immunotherapy) at the moment. But these are not cures so far or 100% effective treatments. And we still don't know what causes POIS. We have much better theories than we used to and even evidence for some of them but all POIS sufferers are not the same and what works for some doesn't work for others. We need to push this if we're going to help everyone. We need to know what POIS is, what causes it, what varieties of POIS there are and use this to  get as close as possible to being cured/ being POIS-free. For us and for future sufferers.

2 months is all we have. So far I have pledged $500. On the condition that we make the March 2012 deadline, I'm upping my pledge to $1500 (seriously, no clappy applause gifs for this please, lets just get that total)


Title: Re: NORD Research Grant
Post by: Ccconfucius on January 29, 2012, 04:00:59 PM
I just wrote rough draft of donation letter request to send to companies. I  just want a generic way to put in letter to tell  company how theywill benefit from donatiing for our cause, or what we will do for them if they donate.
Title: Re: NORD Research Grant
Post by: Ccconfucius on January 29, 2012, 04:43:03 PM
Nordnurse, is there something as to big of a company when asking for donations.
Title: Re: NORD Research Grant
Post by: Stef on January 29, 2012, 06:52:34 PM
Hi Ccconfucius!

The answer is -- NO COMPANY IS TOO BIG TO ASK FOR DONATIONS!

The worst that will happen is that you'll receive a "No", or no reply at all. The best -- of course -- is that you'll have successfully solicited funding!!

You probably know this already and are including this in your letter, but just in case -- emphasize that all donations are tax-deductible (for companies located in or doing business in the USA).

***(Your POIS comrades may want to contribute ideas about companies to send your letter to.)

And one other suggestion (to you and everyone who will give CC some ideas for companies to approach) -- think broadly!  Think to yourselves, "Who would like OUR support in return?" (i.e automobile companies, vitamin and nutritional supplement companies, men's clothing companies, sporting goods companies, even entertainment companies like WWE (World Wrestling Entertainment.)  The sky is the limit here.

This Is a wonderful effort on your part, Ccconfucius! Good luck!!!

Nordnurse, is there something as to big of a company when asking for donations.
Title: Re: NORD Research Grant
Post by: Ccconfucius on January 31, 2012, 11:40:05 AM
thanks.
Title: Re: NORD Research Grant
Post by: Habibou on March 07, 2012, 08:17:55 PM
We will wait for mellivera return but I will pledge 100 $ more since I got a bonus for my training period (I am normally not paid but did a great job despite the POIS...), the best investment possible is the health of course so please give also your unexpected money  :)
Title: Re: NORD Research Grant
Post by: demografx on July 23, 2012, 03:21:01 PM


(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E

 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: NORD Research Grant
Post by: Stef on August 06, 2012, 10:54:02 PM
Hello, All!

I received a message from an NSF forum member.

He reminded me that there may be several of you out there who still worry about losing your money to a POIS fund that doesn't make some type of goal in time,  and that the funds might somehow get transferred out if you don't make that goal.

I wanted to assure you all -- NOTHING will happen to your funds!  The POIS fund has already surpassed the $10,000 mark .

Never -- in a million years -- would NORD move that amount of money into another disease fund. In fact, it's the other way around at this point -- there are small funds (less than $500) that have been languishing for several years -- with no activity and no indications of interest -- that if seemingly related to POIS (i.e. autoimmune, urological, allergic) might be added to your fund to get it to its goal -- if there is only a few thousand $$ left to meet your goal.

In addition, you have a few wonderful and generous donors who are making monthly, automatic deposits.  I believe they come to about $610/month!

Finally, your indiegogo campaign is about to blast off!

So -- forget all concerns about the fund being moved elsewhere.   But still donate!!!  I honestly mean it when I say this -- every dollar is PRECIOUS!

Stef
Title: Re: NORD Research Grant
Post by: Daveman on August 21, 2012, 01:16:27 PM
A note from Nordnurse!!


Hi All,

*(1) Tweet NORD at @rarediseases.  Always end with, Please RT!*  *NORD will
re-tweet, as will NORD's tweeters re-tweet. :-)*

(You are members of the whole rare disease community -- a community that
truly supports each other.)
*
(2) If you have a Face Book page, go to NORD's Face Book page and post
about your Indiegogo fund raiser.  NORD's FB page is
NationalOrganizationforRareDisorders.* (You need a FB page of your own to
do this.)

If you go to NORD's Face Book page, you'll see that there's a post by me.
(I have admin privileges, so it won't show up as me -- which is actually
better for all of you.)  My post says, " These men are raising funds at
NORD for their first research grant. They are about 1/3 of the way to their
goal!"
It has already been "liked" by a woman from an unrelated rare disorder
group.

Do the same -- especially mention the fund raising for a NORD grant on the
FB page!!!!

My post on our FB page accompanies the MarketWire press release  -- there's
a comment by FB -- 1,161 people saw this
post<http://www.facebook.com/NationalOrganizationforRareDisorders#>.
Click on that link now -- see what it says! :-)

It's just the push of a few buttons on your keyboard.  Do it, then do it
again, and then again -- at least daily --* especially tweeting!!!!!*
Tweet to blank open space also -- you can tweet to no one in particular.
And follow your fearless tweeting leader, Daveman, at @indiego_POIS  with
your tweets also.

Someone is out there who has the funds -- may also have POIS -- or have a
loved one with POIS.  Just do it!


Stef
Title: Re: NORD Research Grant
Post by: demografx on August 29, 2012, 11:46:15 PM



Let's Cure POIS. Now.


(http://www.theoink.net/index3_htm_files/now_appearing1.gif)

Make "POIS Cured!"
the Feature Presentation - not Arnold!


(http://collider.com/wp-content/uploads/expendables-2-movie-poster-arnold-schwarzenegger.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
Title: Re: NORD Research Grant
Post by: Stef on September 13, 2012, 12:12:58 PM
Hi All!

This is just an FYI for those of you who are making automatic, recurring donations to NORD's POIS research grant fund.

If you're credit card expires, and you want to continue with your automatic donations, please re-register via our online donation page --
https://rarediseases.org/about/support/research-donations/fg_base_view_p3. (https://rarediseases.org/about/support/research-donations/fg_base_view_p3.)

We ran into this situation with a recurrent donor whose card expired at the end of August.

It's very easy to fix by simply re-registering with your new card. If you have any questions or concerns, please feel free to send a PM or email me directly at NORD -- rn@rarediseases.org (http://rn@rarediseases.org).

Best wishes to everyone!

Stef
Title: Re: NORD Research Grant
Post by: demografx on September 13, 2012, 12:18:13 PM
Thanks, Stef!!
Title: Re: NORD Research Grant
Post by: poisioq on September 14, 2012, 06:00:16 AM
i would like to donate something trought he nord website but it asks for our home address. will it ship anything?
i'd prefer not receive any stuff at home.
another question. if for example i want to donate 50$, should i put 050.00?
thanks
Title: Re: NORD Research Grant
Post by: Stef on September 14, 2012, 09:11:05 AM
i would like to donate something trought he nord website but it asks for our home address. will it ship anything?
i'd prefer not receive any stuff at home.
another question. if for example i want to donate 50$, should i put 050.00?
thanks

Hi boissiog!

Nothing will be sent to your home address.
Our Accounting and Development Departments are very aware of the POIS forum's anonymity request.

The home address is needed because a charge card is used. I believe this is always the case when a charge card is used online.

***We will NEVER give any information out to anyone -- this is a policy that will never change at NORD. Having your address on file through your donation is only because a charge card was used.  All personal information is held in strict confidence here.

I'm notified of all research fund donations, so POIS fund donors will receive an email only from me  -- acknowledging the donation and specifically asking if he/she wants a formal postal letter sent. (The letter would be for tax deduction records -- this really only pertains to people living in or doing business in the US). So far, only one person has requested that a letter be mailed.

I understand that our online donation page has some areas that can be confusing.  So --

If someone wants to donate $50, just type in 50.00
If someone wants to donate $100, type in 100.00 
If someone wants to donate $1, type in 1.00

Don't use any $$ symbols.

One more important item -- if you enter your donation information, press the "submit" button, and then receive an "error" message, please note the error number. Either post it on the forum or send it to me (PM or email).  Our IT manager will figure out the error (often it's very minor) and I'll get back to you right away so that it can be fixed.

Last but not least, when someone makes a donation to NORD -- for any fund -- he/she receives an automatic email reply that states that a letter will be sent by mail, thanking the donor for the donation.  Just ignore that!!  We aren't automatically mailing "thank you" letters for the POIS donations.  Instead, you'll hear back from me via email, as I just explained.

I hope this answered your question, boissiog.

Stef




Title: Re: NORD Research Grant
Post by: demografx on September 14, 2012, 10:10:36 AM
Stef, I know I sound like a broken record, but I am so thankful of your constant clarification of issues. You are a Guiding Light in this bewildering world of finding a cure for a rare disorder!!!!!
Title: Re: NORD Research Grant
Post by: poisioq on September 14, 2012, 01:44:04 PM
thank you very much for your explanation Stef!
Title: Re: NORD Research Grant
Post by: Stef on September 14, 2012, 01:47:27 PM
Hi boissioq and demografx,

You're both welcome!

(Sometimes our online donation page can seem more bewildering than POIS!)

Stef
Title: Re: NORD Research Grant
Post by: Daveman on September 15, 2012, 08:06:53 AM
i would like to donate something trought he nord website but it asks for our home address. will it ship anything?
i'd prefer not receive any stuff at home.
another question. if for example i want to donate 50$, should i put 050.00?
thanks

Hi boissiog!

Nothing will be sent to your home address.
Our Accounting and Development Departments are very aware of the POIS forum's anonymity request.

The home address is needed because a charge card is used. I believe this is always the case when a charge card is used online.

***We will NEVER give any information out to anyone -- this is a policy that will never change at NORD. Having your address on file through your donation is only because a charge card was used.  All personal information is held in strict confidence here.

I'm notified of all research fund donations, so POIS fund donors will receive an email only from me  -- acknowledging the donation and specifically asking if he/she wants a formal postal letter sent. (The letter would be for tax deduction records -- this really only pertains to people living in or doing business in the US). So far, only one person has requested that a letter be mailed.

I understand that our online donation page has some areas that can be confusing.  So --

If someone wants to donate $50, just type in 50.00
If someone wants to donate $100, type in 100.00 
If someone wants to donate $1, type in 1.00

Don't use any $$ symbols.

One more important item -- if you enter your donation information, press the "submit" button, and then receive an "error" message, please note the error number. Either post it on the forum or send it to me (PM or email).  Our IT manager will figure out the error (often it's very minor) and I'll get back to you right away so that it can be fixed.

Last but not least, when someone makes a donation to NORD -- for any fund -- he/she receives an automatic email reply that states that a letter will be sent by mail, thanking the donor for the donation.  Just ignore that!!  We aren't automatically mailing "thank you" letters for the POIS donations.  Instead, you'll hear back from me via email, as I just explained.

I hope this answered your question, boissiog.

Stef






Just an additional note. In some countries, commas are used instead of periods to separate the dollars from the cents. $100,00 instead of $100.00 . Hope you can see the difference.

The NORD page ONLY uses periods. Do NOT use commas.

Title: Re: NORD Research Grant
Post by: poisioq on September 15, 2012, 09:35:58 AM
yes I know about the difference
thank you  :)
Title: Re: NORD Research Grant
Post by: demografx on September 15, 2012, 02:28:29 PM
Hi boissioq and demografx,

You're both welcome!

(Sometimes our online donation page can seem more bewildering than POIS!)

Stef

Yes, each time I donate I get brain fog! ;D
Title: Re: NORD Research Grant
Post by: demografx on September 21, 2012, 08:23:56 PM
THANK YOU!!

FOR THE RECENT $400.00 DONATION!!!!!!!!
Title: Re: NORD Research Grant
Post by: Daveman on September 22, 2012, 06:49:29 AM
WOW $400!

That puts us well over $12,000, can you believe it?

That $400 must have hurt. One of us cares enough to go that far out. And I know, almost any amount hurts!

Perhaps not as much as POIS. POIS is continuous, or at best 50, 60% of the time. Even a monthly donation only hurts for a day, maybe 2.

Thank you Mr. Donor, and for all of those who have helped us get to $12,312. Come on, we're getting there! To freedom.

Title: Re: NORD Research Grant
Post by: Observer on September 22, 2012, 10:38:29 AM
Amazing! Thank you very much to the one who donated this amount!  :) ... and to everyone who has decided to support the research grant!
Title: Re: NORD Research Grant
Post by: Ccconfucius on September 22, 2012, 11:07:05 AM
the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others
Title: Re: NORD Research Grant
Post by: Daveman on September 22, 2012, 12:37:10 PM
the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others

You are a true asset to the POIS cause CertainlyPOIS. Not only with donations but with hard work and dedication to actually  moving us forward.
It wouldn't be the same without you!

Right now BTW if we could only turn  those pledges into actual donations we'd be very close to complete. Good going!

Title: Re: NORD Research Grant
Post by: demografx on September 22, 2012, 12:58:02 PM
the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others

THANK YOU, CertainlyPOIS FOR THE $400.00 DONATION!

It comes at a time that we really need to see the forward momentum.

And your overall contributions to POIS have been nothing short of phenomenal!

Thank you so much,
demo
Title: Re: NORD Research Grant
Post by: Daveman on October 01, 2012, 02:36:53 PM
The last donation of (http://dersamurai.files.wordpress.com/2012/06/1000-dollar-us-bill-front.jpg) was a sign of (http://upliftingchrist.files.wordpress.com/2012/06/faith-1.jpg) by someone who contacted me and said he was willing to cover an equal amount of all the donations that come in for the month of October!

So everybody, make your (http://projects.fit.edu/serra/Money.jpg) work for you!

If you make a donation between now and the 31st of October our "SPONSOR" will donate an equal amount!

So you donation of $10 NOW will have the impact of $20, $100 will mean a total of $200 and so on.

So come on everybody,MAKE IT COUNT!!

And a great applause for our "SPONSOR"!


(http://gifsoup.com/webroot/animatedgifs/754962_o.gif)


Title: Re: NORD Research Grant
Post by: demografx on October 01, 2012, 08:28:19 PM
Thank you, "SPONSOR"!!!

This is an incredibly wonderful and motivating gesture on your part!

Demo
Title: Re: NORD Research Grant
Post by: Stef on October 01, 2012, 08:37:29 PM
Thank you, "SPONSOR"!!!

This is an incredibly wonderful and motivating gesture on your part!

Demo

Daveman and Demo,

You two haven't been working in vain on behalf of finding a cure for POIS.  Your wonderful anonymous sponsor is proving that! :-)

Stef
Title: Re: NORD Research Grant
Post by: demografx on October 01, 2012, 09:03:37 PM
I'm speechless.
Title: Re: NORD Research Grant
Post by: Ccconfucius on October 01, 2012, 10:21:33 PM
Much love for the sponsor.
i really dont know how to say thank you, what you are doing is incredible.
Title: Re: NORD Research Grant
Post by: kurtosis on October 02, 2012, 03:11:02 AM
Much love for the sponsor.
i really dont know how to say thank you, what you are doing is incredible.


Many thanks to the Sponsor.
Title: Re: NORD Research Grant
Post by: Stef on October 02, 2012, 07:05:24 AM
Much love for the sponsor.
i really dont know how to say thank you, what you are doing is incredible.

CertainlyPOIS -- your post is beautiful!
 
I think this is the first time a forum member has expressed loving gratitude. 

As Daveman and Demo have often mentioned, you have always been a most wonderful forum member -- in all respects.

Thank you for the grace and humility that you always bring to this forum. 


Stef
Title: Re: NORD Research Grant
Post by: mat780 on October 03, 2012, 05:45:55 PM
My greatest gratitude to the anonymous SPONSOR.
I’ve donated $100 yesterday night.

Thanks,
Mat
Title: Re: NORD Research Grant
Post by: Daveman on October 03, 2012, 07:08:48 PM
My greatest gratitude to the anonymous SPONSOR.
I’ve donated $100 yesterday night.

Thanks,
Mat


Great Going Matt, you've been with the POIS movement forever!

You've doubled your money, Thanks!
Title: Re: NORD Research Grant
Post by: Stef on October 03, 2012, 08:50:05 PM
Hi All!

Just to add to Daveman's post about Mat's wonderfull $100 donation -- your fund also just received a $50 donation -- your second donation this month! And it's only October 3rd!

The young man who donated this $50 has already done it four times in the past two months!!!  He's figured out what he can afford -- and is sticking to his plan.  I so wish that I could shout out his name -- but that's up to him.

In addition, you've got some donors who continue to make monthly donations -- one for $500, another for $10.

The POIS fund is keeping NORD's Accounting Department very busy!!!!! It's NORD's most active grant fund. :-)

Stef


Title: Re: NORD Research Grant
Post by: demografx on October 05, 2012, 12:15:45 AM
Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to  our most generous SPONSOR!

Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free  life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


                                             (http://poiscenter.com/newsletters/2for1.jpg)
Title: Re: NORD Research Grant
Post by: demografx on October 05, 2012, 12:18:19 AM
My greatest gratitude to the anonymous SPONSOR.
I’ve donated $100 yesterday night.

Thanks,
Mat


Great Going Matt, you've been with the POIS movement forever!

You've doubled your money, Thanks!


MAT - YOUR CONTRIBUTION IS WONDERFUL!

You have been a GREAT contributing member to furthering the POIS cause.

Mat, you created 2 teriffic websites for POIS - can you post the links again?

Thank you!!!
Title: Re: NORD Research Grant
Post by: Daveman on October 07, 2012, 08:28:18 AM
A reminder everybody!

We have a unique opportunity to receive a donation of $1000, $2000 or even more, by our Special Sponsor, but we need to donate like amount.

If you are going to donate, NOW is the time to do it, otherwise we stand to loose this REAL pledge.

Everything is being done to make a difficult thing as easy as possible.

Thanks to those who have come forward! But we still need quite a bit more!

And remember, it isn't for me or Demo, or the sponsor, but for YOU, and POIS!

ONLY through research can we get information and validation of POIS to doctors world wide, so that anyone with POIS (although he may not even know it) can step into his doctor's office and not be treated like a fool!

Title: Re: NORD Research Grant
Post by: mat780 on October 07, 2012, 03:17:16 PM
Mat, you created 2 teriffic websites for POIS - can you post the links again?

Thank you!!!

Of course, Demo!  ;)

These two web pages were created with the contribution of many members and have a lot of useful/interesting information:

POIS Information Website: https://sites.google.com/site/poiswebsite/

POIS YouTube Channel: http://www.youtube.com/user/POISchannel


Mat
Title: Re: NORD Research Grant
Post by: demografx on October 07, 2012, 06:26:22 PM
THANK YOU, MAT!!

Demo
Title: Re: NORD Research Grant
Post by: demografx on October 07, 2012, 06:26:57 PM
Look for our latest mailout! If you haven't received it check you should check your SPAM folder

Time to blast POIS! Let's Go!

(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: NORD Research Grant
Post by: demografx on October 17, 2012, 01:42:12 PM
See the Countdown Timer for POIS' OCTOBER MONEY BOMB!

http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB

Demo and Daveman
Title: Re: NORD Research Grant
Post by: Habibou on October 19, 2012, 10:51:27 AM
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research  :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !
Title: Re: NORD Research Grant
Post by: demografx on October 19, 2012, 10:59:01 AM
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research  :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !


(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)

$9,270.00    $9,350.00    $10,272.00
$15,510.00 raised!
 
THANKS, HABIBOU & FAMILY!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p
Title: Re: NORD Research Grant
Post by: Daveman on October 19, 2012, 11:48:20 AM
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research  :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !


Very good going Mr. and Mrs. "Habibou"!!

Thank you very much. Thank your parents for understanding!!

This is a great message for us everybody! It is likely a lot better and easier to let family know. They probably understand more than you think.

I'll put the total up right away.

Title: Re: NORD Research Grant
Post by: demografx on October 20, 2012, 02:28:43 AM
(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)

$9,270.00    $9,350.00    $10,272.00
$16,610.00 raised!
 
THANKS, NEW $1,000 DONOR!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)

Title: Re: NORD Research Grant
Post by: demografx on October 20, 2012, 02:33:54 AM
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research  :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !


Very good going Mr. and Mrs. "Habibou"!!

Thank you very much. Thank your parents for understanding!!

This is a great message for us everybody! It is likely a lot better and easier to let family know. They probably understand more than you think.

I'll put the total up right away.



Daveman, hopefully other sufferers' families will see the light.

Habibou $ Family are FIRST to show other families the way to help!
Title: Re: NORD Research Grant
Post by: Habibou on October 22, 2012, 04:15:59 PM
Thank you so much from me and my parents Stefanie, Demo and Daveman for your sweet messages  :)
They were really happy to help me/us since they see how it destroyed my life in every fields !
Title: Re: NORD Research Grant
Post by: mat780 on October 23, 2012, 05:06:19 PM
Thanks to the anonymous $1000 donor!!! Amazing!!!
Together we will beat POIS!  :)
Title: Re: NORD Research Grant
Post by: Stef on October 23, 2012, 09:19:16 PM
Hello, All

The forum members who have been donating to the POIS grant fund so generously this month are paving the way for everyone's recovery from this horrible condition.  I sincerely applaud you.  

This is quite a money bomb!!!

I want you all to know that Mr. and Mrs. Habibou are in a league with a few other loving and concerned parents here.  Other donations have been received that are from the parents!

Consider asking your parents or loved ones to donate.  They will most likely want to help in some way.

If our son were suffering from this misery called POIS, there is no question-- whatsoever -- that my husband and I would be donating regularly -- as much as we could afford.  It would be the only way out of this POIS hell -- and we'd do anything to help our son.

Most parents are like that, just FYI -- even those who can only afford a few dollars at a time.

As Daveman has noted beneath his posts, "Without research there will be no cure."  Truer words do not exist.  Research -- the real, scientific kind -- is the ticket OUT OF POIS.

Let's thank all the parents and other loved ones for their donations to your research!  The human family is AMAZING!



Stef
Title: Re: NORD Research Grant
Post by: deloun on October 24, 2012, 01:16:21 PM
To Stefany from NORD. I've also sent this question to NORD directly a moment ago.

I would like to donate but I don't have a credit card and it's not an option for me to get a credit, debit or prepaid credit card.
Is there a way for me to just pay by bank transfer or by paypal?
Although it is common in the US to own a credit card, in many other countries it is not common at all. I think you will miss out on many donations this way.
Can you please respond as soon as possible? Because I would like to donate before the end of this month.
Title: Re: NORD Research Grant
Post by: Stef on October 24, 2012, 03:12:39 PM
To Stefany from NORD. I've also sent this question to NORD directly a moment ago.

I would like to donate but I don't have a credit card and it's not an option for me to get a credit, debit or prepaid credit card.
Is there a way for me to just pay by bank transfer or by paypal?
Although it is common in the US to own a credit card, in many other countries it is not common at all. I think you will miss out on many donations this way.
Can you please respond as soon as possible? Because I would like to donate before the end of this month.

Hello, deloun --

Yes -- NORD can accept a bank transfer. (Unfortunately we don't use PayPal -- I don't know why.)
I'm out of the office today, as is the Chief of the Accounting Department.  She has our bank transfer number which you'd need for a bank transfer. I  believe she'll be back in tomorrow (October 24th).

I'll need your real name -- so please either PM me with your real name or email me with it at rn@rarediseases.org.  The only way we'll know that your bank transfer is for the POIS fund is by knowing your name.
As an aside, the bank transfer must be in US dollars.

I hope this answer is helpful!

Stef
Title: Re: NORD Research Grant
Post by: deloun on October 24, 2012, 04:17:07 PM
Hello Stefanie,

That's very nice, thanks. I'll contact you about it.
I think it should be mentioned on the donation page though, that it's also possible to donate by bank transfer, so you don't miss out on people who want to donate but can't use a credit card.
Title: Re: NORD Research Grant
Post by: Stef on October 24, 2012, 08:33:41 PM
Hello Stefanie,

That's very nice, thanks. I'll contact you about it.
I think it should be mentioned on the donation page though, that it's also possible to donate by bank transfer, so you don't miss out on people who want to donate but can't use a credit card.

Hi deloun,

I've just sent you a PM with our bank transfer information. (I'd post it publicly, but because our Accounting Director is away until tomorrow, Oct. 25, I don't know if I have clearance to post it.)

As an aside, I have mentioned this option (bank check/transfer) in previous research fund posts on this forum.  But I think your point is good -- it should be mentioned on our online donation page. 

I will let our IT Manager know your suggestion.

Thank you!!

Stef
Title: Re: NORD Research Grant
Post by: deloun on October 25, 2012, 05:11:41 AM
Thanks, Stefanie!
Title: Re: NORD Research Grant
Post by: Habibou on October 25, 2012, 04:53:59 PM
THANK YOU ANONYMOUS DONATOR !
Yes, it feels like it increased so much faster this month... thank you SPONSOR !  :)
Title: Re: NORD Research Grant
Post by: Nightingale on October 29, 2012, 05:53:05 PM
After talking with my mother she has donated $250  :)
Title: Re: NORD Research Grant
Post by: demografx on October 29, 2012, 07:05:39 PM


THANK
YOU
NIGHTINGALE AND FAMILY!!!
Title: Re: NORD Research Grant
Post by: Limejuice on October 31, 2012, 11:21:53 AM
It hasn't appeared to have posted on our site yet but two days ago I donated $1,000 to our research grant.  I wanted our very generous and giving sponsor who's matching donations to know that I met his October schedule.  Thank you sponsor.
Title: Re: NORD Research Grant
Post by: demografx on October 31, 2012, 02:46:23 PM


THANK
YOU
LIMEJUICE!!!

$1,000.00!!!

Title: Re: NORD Research Grant
Post by: demografx on November 20, 2012, 08:52:46 AM
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR "FINAL HOME $TRETCH!"


(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)




(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E for one-time (not recurring) donation!
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: NORD Research Grant
Post by: demografx on November 23, 2012, 04:06:12 PM

Our POIS Medical Research Funding Progress!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
Title: Re: NORD Research Grant
Post by: demografx on December 12, 2012, 08:36:39 PM
Most may remember "Squiqqy" in Laverne and Shirley.. he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

Click here to PLEASE donate:


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: NORD Research Grant
Post by: mat780 on January 06, 2013, 09:49:30 AM
I've just donated $100. I hope more POIS Heroes join me.

This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort today we can change our lives.

How much would you pay to be POIS free forever???

I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life that I want.

Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!


Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!

You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!

As Demo said in another post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?

Join the POIS Heroes movement by donating today!

Thanks,
Mat
Title: Re: NORD Research Grant
Post by: demografx on January 06, 2013, 12:44:33 PM

I've just donated $100. I hope more POIS Heroes join me.

This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort today we can change our lives.

How much would you pay to be POIS free forever???

I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life that I want.

Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!


Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!

You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!

As Demo said in another post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?

Join the POIS Heroes movement by donating today!

Thanks,
Mat

Title: Re: NORD Research Grant
Post by: demografx on January 06, 2013, 12:47:38 PM

I've just donated $100.
,
Mat


Thank you, Mat, for your REPEAT DONATION!!!
Title: Re: NORD Research Grant
Post by: Observer on January 06, 2013, 07:58:17 PM
I'll make an extra-effort before our March deadline. Everyone should give something, we really have the power to achieve our goal before this deadline and the moment to act is now(between now and 3rd week of March). Don't wait for other people, you and only you have the power to make a difference !
Title: Re: NORD Research Grant
Post by: demografx on January 06, 2013, 10:39:58 PM
Observer, it will happen soon. People are responding with repeat donations!

Newcomers will come along soon!
Title: Re: NORD Research Grant
Post by: demografx on March 05, 2013, 03:03:18 PM
(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)

In February,  $2,542.90 was raised.
 
That gives us $33,677.00 since the balance of Feb 13 ($31,937.00) plus $1,240.00 (amijgoro) plus another $800.00 came in, to which Amij does not contribute.


For......... a grand total of....................... $33,677.00 + $800.00       =     $34,477.00 (we benefit by going over $minimum)

(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)
Title: Re: NORD Research Grant
Post by: Habibou on March 16, 2013, 01:17:13 PM
What a great thing !
When does the research start?
Title: Re: NORD Research Grant
Post by: Stef on March 16, 2013, 07:57:43 PM
What a great thing !
When does the research start?

Hello, Habibou!

The grant (Request for Proposal -- "RFP") will be posted on our website, along with NORD's other RFPs, at the end of March (this month). We will also be sending MANY individual emails to potential applicants about your grant.

There will be a lot of processes going on between NORD's Medical Advisory Committee (MAC) and the applicants.  Nine to ten months later, around late November 2013, the award recipient will finally be chosen by NORD's MAC.

So -- the research will begin in around nine-ten months.  I know that it sounds like a long time -- but it's the only way to find the right and best researcher.

I'll keep you all posted as things progress -- you'll be able to see your RFP online when NORD posts it, and all of you will be able to share it, pass it on to others, to your own physiciains. etc.

I hope that answered your question, Habibou.

Stef
Title: Re: NORD Research Grant
Post by: Habibou on March 18, 2013, 06:42:03 PM
Thank you Stef ! I am aware of it now.. better to wait some months and have the accurate researcher  :)
Title: Re: NORD Research Grant
Post by: demografx on March 19, 2013, 08:04:52 PM
I have been waiting over 30 years for some real answers, I can wait a few more months :)
Title: Re: NORD Research Grant
Post by: bjameshill on March 20, 2013, 10:55:55 PM
Just donated $250.  I know its too late for the first grant...just found the site.  Plan to do it again.  Couple of questions:  Are the research cycles yearly? Would there be any value in funding another research grant with a different company?
Title: Re: NORD Research Grant
Post by: Stef on March 21, 2013, 03:30:52 PM
Just donated $250.  I know its too late for the first grant...just found the site.  Plan to do it again.  Couple of questions:  Are the research cycles yearly? Would there be any value in funding another research grant with a different company?

Hello, bjameshill --

It's not too late for your donation to go to this year's POIS grant.  The cut-off date is March 22, 2013. So, your donation will go to this 2013 grant. :)

To answer your questions --
 
(1) In general, NORD's grants are posted on a once/year cycle, in March.  There have been a few times where patient groups reached their funding goal in July or August, and were very anxious to get started.  If there are at least two grants ready at that time (for two different disorders), we'll post a second cycle of grants. 
It takes a lot of time and effort to post a second grant cycle, and includes requesting our Medical Advisory Committee to put in those extra hours of review. (They score the proposals on a voluntary basis -- they aren't paid to do this.)  So -- we try to keep it to a once/year event.

(2) There's always value in looking into research-funding through other organizations or companies!  (NORD isn't a private company -- we're a non-profit organization, just FYI.) 

Stef
Title: Re: NORD Research Grant
Post by: demografx on March 21, 2013, 03:34:28 PM
Thank you for clarifying this, Stef!
Title: Re: NORD Research Grant
Post by: bjameshill on March 21, 2013, 10:23:00 PM
Thanks Stef.  What a great service NORD provides!

Title: Re: NORD Research Grant
Post by: demografx on March 21, 2013, 11:27:01 PM

Just donated $250...Plan to do it again. 


Thank you, bjameshill!
Title: Re: NORD Research Grant
Post by: Clycos on March 26, 2013, 12:41:30 AM
Thank you!
Title: Re: NORD Research Grant
Post by: Stef on March 29, 2013, 10:53:46 AM
Hello, Everyone!

First, my apologies to you for not being able to provide an update about your research grant until today. NORD has been going through it annual financial audit for the past two weeks, so it's been very difficult to sort out all of our research grant funds in a more timely manner. 

But we did it -- and you men have done splendidly!!! You have officially surpassed the minimum amount to offer for a grant! 

In total, you've raised $34,850.  NORD's administrative fee is $3,500. This leaves you with a $31,350 grant award to offer.   This translates to 90 cents of every dollar going directly to your research.

Your POIS grant will be posted online some time next week (the week of April 1st).  I'll provide the link to it (to the "RFP") in this section of your forum ASAP.

You really, truly did a wonderful job.

Congratulations!!! 

Stef



Title: Re: NORD Research Grant
Post by: Vincent M on March 29, 2013, 11:32:45 AM
Thanks for the update, Stef.
Title: Re: NORD Research Grant
Post by: Clycos on April 02, 2013, 01:00:39 AM
Thank you!! Can't wait!
Title: Re: NORD Research Grant
Post by: demografx on April 19, 2013, 08:13:50 PM
We did it! $31,000 POIS Grant!

(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)

Pass it on! Show the world!
http://tinyurl.com/bwhbn5k


Title: Re: NORD Research Grant
Post by: Suppertime on April 20, 2013, 12:47:02 PM
Will they be requiring specimens? I would be happy to have them research me if I can get a free trip there xD
Title: Re: NORD Research Grant
Post by: demografx on April 20, 2013, 04:56:08 PM
Suppertime, when the grant is finally awarded, the NORD-chosen researcher(s) will let us know what they need from us.
Title: Re: NORD Research Grant
Post by: nenexx on April 21, 2013, 03:56:47 AM
Do we know how long it will take before they start research, and how long is it estimated that the research will take?
Title: Re: NORD Research Grant
Post by: demografx on April 21, 2013, 12:39:22 PM
nennex, the RFP should give you a sense of timelines in this process.

http://tinyurl.com/bwhbn5k


Title: Re: NORD Research Grant
Post by: demografx on November 25, 2013, 06:03:46 PM

Any news on how the POIS research is going with the $30,000 NORD grant? Or any news on when there will be some more news?


hello
demografx
 
When will the [POIS] research [begin with NORD]?

thank you


This December.

I should be getting an update first week in December, maybe not who or what yet, but they are in the final throes of choosing the researcher.

So very soon we should know.

The first real professionally administered and controlled research on POIS.

Whatever the results, it will have to be useful.

I'll let you all know when the news comes out.
daveman

I and my Russian friends will be waiting impatiently

thank you


Thank you, Daveman!

This is a  H I S T O R I C  moment for all POISers!!!

Title: Re: NORD Research Grant
Post by: ve-to on December 17, 2013, 11:42:50 PM
news? :)
Title: Re: NORD Research Grant
Post by: Daveman on December 18, 2013, 06:35:42 AM
news? :)

It has to be imminent... any day now. They are processing other grants as well, and there are formalities and winners must be confirmed ... all that.

I really hope we hear something before the week is out.

Fingers crossed!

 
Title: Re: NORD Research Grant
Post by: amijgoro on December 18, 2013, 11:47:09 AM
"winners must be confirmed" ??
I don't have to have any doubts about our grant being chosen, right?
Title: Re: NORD Research Grant
Post by: demografx on December 18, 2013, 01:25:12 PM
Amijgoro, don't be concerned, everything is proceeding perfectly!
Title: Re: NORD Research Grant
Post by: Daveman on December 18, 2013, 03:06:53 PM
Amijgoro, don't be concerned, everything is proceeding perfectly!

Yeah, formalities more than anything.

All grants had been reduced to three finalists, who submited detailed applications. Then they were re-scored, because the full application has all the detail, not just a summary.

Then once the finalist has been chosen, as a formality, they just have to make sure that he is still ready. (No-one on the team got sick or heaven forbid,
died or whatever). Those kind of formalities. If (s)he made a formal application only a short time before, it is not likely that they would not be available barring some
disaster.

Waiting is painful. Hopefully they will let us know VERY soon!!

Title: Re: NORD Research Grant
Post by: amijgoro on December 18, 2013, 03:42:11 PM
Thank you Stef, for your words of measurement  :)
Title: Re: NORD Research Grant
Post by: demografx on December 18, 2013, 08:02:18 PM
Daveman and I have just been in touch with NORD and we expressed our concerns about the RFP delay.

Title: Re: NORD Research Grant
Post by: demografx on December 20, 2013, 06:59:51 PM
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!

Barry Komisaruk, PhD from Rutgers University in New Jersey, is the award recipient and the Principal Investigator for the first formal POIS study. He will be working in conjunction with an MD from Rutgers.

The research will focus on fMRI's in men with POIS, will include control subjects for comparison, and will examine brain function before, during and after orgasm.

The purpose of the study is to observe reactions and structural changes that may be occurring in the brains of POIS sufferers -- changes which explain the severe cognitive impairments of POIS, and also potentially explain the general physical reactions as a whole (pain, headache, severe fatigue, as examples).

If brain reactions are found, this will lead to determining the cause of POiS -- but more importantly -- may well elucidate treatments that are available now-- to counteract these changes.

Landmark study!!!!  More to follow!!!!
Title: Re: NORD Research Grant
Post by: demografx on December 20, 2013, 07:46:28 PM
(http://i858.photobucket.com/albums/ab143/demografx/0F3CA958-398F-4358-BE6C-48C87BEE2564.jpg)

Available @ Amazon
Title: Re: NORD Research Grant
Post by: mat780 on December 20, 2013, 07:47:21 PM
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!

Excellent news Demo!

Thanks everybody for contributing to do POIS Research a reality!

We could say it's one of the best Xmas presents we could have.

Happy Xmas and happy New Year!!!

Regards,
Mat


Title: Re: NORD Research Grant
Post by: demografx on December 20, 2013, 11:38:38 PM
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!

Excellent news Demo!

Thanks everybody for contributing to do POIS Research a reality!

We could say it's one of the best Xmas presents we could have.

Happy Xmas and happy New Year!!!

Regards,
Mat




Perfect way you celebrate this, mat780!!!!!
Title: Re: NORD Research Grant
Post by: demografx on December 21, 2013, 06:12:43 PM
(http://i858.photobucket.com/albums/ab143/demografx/528EC022-1FC1-4DDF-9AE7-C509DC5612EF_1.jpg)
Title: Re: NORD Research Grant
Post by: devastated on December 26, 2013, 04:59:41 AM
Sounds promising. I hope he examines as many sufferers as possible. The wider the range, the better. Separate teams of people with mainly mental / mainly physical symptoms could perhaps help to faster establish a specific pattern.
Title: Re: NORD Research Grant
Post by: Chris on December 26, 2013, 06:09:15 AM
Great news guys!
I suggest everyone keep calm and patient until good results start to arrive.
There will be light..Thanks to everyone, who contributed to make this real.
If we keep united like this then we will beat POIS.
Happy holidays !
Title: Re: NORD Research Grant
Post by: Daveman on December 26, 2013, 07:20:31 AM
Sounds promising. I hope he examines as many sufferers as possible. The wider the range, the better. Separate teams of people with mainly mental / mainly physical symptoms could perhaps help to faster establish a specific pattern.

Should look at:

Onset, during and in the immediate minutes of ejaculation
What happens with different levels of stimulation, pre-ejaculation for those that get POIS without full orgasm.
Should see what happens with niacin, for those for whom it helps and those that it doesn't
Effects of other relief programs
Should look at a progression through the 5 to 10 days recording symptoms against results.
Should of course test the same things with people who do NOT have POIS.

Etc!


Title: Re: NORD Research Grant
Post by: demografx on February 06, 2014, 03:24:17 PM

FROM NORD

On Feb 6, 2014, at 12:11 PM, Jason Barron at NORD wrote:

Dear Demo and Daveman,
 
The announcements for 2013 NORD research grant award recipients have been posted on NORD’s website.  For easier navigation and retrieval, I’m including a link to the updated content, here:  https://www.rarediseases.org/medical-professionals/research-grants/recipients.  Please note that the announcement for the POIS category indicates the sponsorship of the POIS Forum.  If you have any other questions or concerns about the grant award and its associated research project, please feel free to contact me at your convenience.
 
Kind regards,
Jason
 
---
Jason Barron
Research Administrator
Associate Director, Medical and Scientific Affairs
National Organization for Rare Disorders (NORD)
1779 Massachusetts Avenue NW, Suite 500
Washington, DC  20036
Email: jbarron@rarediseases.org
T  (202) 588-5700 x109
F  (202) 588-5701
M (203) 482-3398

This e-mail and any attachments may contain confidential and privileged material for the sole use of the intended recipient. Any review, use, distribution or disclosure by others is strictly prohibited. If you are not the intended recipient (or authorized to receive for the recipient), please delete the e-mail, along with any attachments, without copying or disclosing it and notify the sender by reply e-mail immediately. Thank you.
 
 
 
Title: Re: NORD Research Grant
Post by: demografx on February 11, 2014, 09:55:40 PM

FROM STEF RE TRAVEL TO NEWARK!

Hi All,

The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult. 

It takes ~ three weeks for them to make arrangements, FYI.

They've been around for years and are a reliable, trustworthy non-profit organization --

National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767

I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.

Stef