Author Topic: NORD Research Grant  (Read 137521 times)

B_Daniel

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Re: Funding a POIS research grant
« Reply #15 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.    
« Last Edit: June 01, 2011, 12:58:13 AM by B_Daniel »

Vandemolen

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Re: Funding a POIS research grant
« Reply #16 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.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

demografx

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Re: Funding a POIS research grant
« Reply #17 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.
« Last Edit: June 01, 2011, 11:17:03 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Funding a POIS research grant
« Reply #18 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!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Daveman

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Re: Funding a POIS research grant
« Reply #19 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.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: Funding a POIS research grant
« Reply #20 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!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Daveman

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Re: Funding a POIS research grant
« Reply #21 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.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: Funding a POIS research grant
« Reply #22 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

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Stefanie, as always, you're the greatest! Thank you!
« Last Edit: June 01, 2011, 07:56:31 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Funding a POIS research grant
« Reply #23 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"?
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Daveman

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Re: Funding a POIS research grant
« Reply #24 on: June 01, 2011, 08:11:35 PM »
WAY TO GO DEMO
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Vandemolen

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Re: Funding a POIS research grant
« Reply #25 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
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Ccconfucius

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Re: Funding a POIS research grant
« Reply #26 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.

Stef

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Re: Funding a POIS research grant
« Reply #27 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.


Daveman

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Re: Funding a POIS research grant
« Reply #28 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.
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: Funding a POIS research grant
« Reply #29 on: June 02, 2011, 11:05:45 AM »
I won't waste words by reiterating Daveman's comments above.

Perfectly stated! I agree wholeheartedly.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business