Author Topic: NORD Research Grant  (Read 156883 times)

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

demografx

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Re: Funding a POIS research grant
« Reply #30 on: June 02, 2011, 01:09:40 PM »


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


Thank you so much, Limejuice!!
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 #31 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!
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

biocentric

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Re: Funding a POIS research grant
« Reply #32 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.

Daveman

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Re: Funding a POIS research grant
« Reply #33 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

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
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« Last Edit: June 04, 2011, 10:50:39 PM by demografx »
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!

Daveman

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Re: Funding a POIS research grant
« Reply #34 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!

« Last Edit: June 03, 2011, 10:16:08 PM by demografx »
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 #35 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.
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.

Daveman

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Re: Funding a POIS research grant
« Reply #36 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.
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!

Ccconfucius

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Re: Funding a POIS research grant
« Reply #37 on: June 03, 2011, 09:14:35 PM »
how do we know how much is in account, a meter will be cool.

demografx

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Re: Funding a POIS research grant
« Reply #38 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
« Last Edit: June 03, 2011, 10:35:52 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

Daveman

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Re: Funding a POIS research grant
« Reply #39 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.

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!