Author Topic: NORD Research Grant  (Read 136395 times)

demografx

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Re: NORD Research Grant
« Reply #90 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:



« Last Edit: August 09, 2011, 12:13:37 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: NORD Research Grant
« Reply #91 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!!! :) :) :) :) :)
« Last Edit: August 09, 2011, 04:45:07 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

B_Daniel

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Re: NORD Research Grant
« Reply #92 on: August 14, 2011, 01:58:05 PM »



One day we're gonna Flush POIS!  We should coin that "the royal flush".

Habibou

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Re: NORD Research Grant
« Reply #93 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  :)
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

Daveman

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Re: NORD Research Grant
« Reply #94 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.
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!

Habibou

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Re: NORD Research Grant
« Reply #95 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 !  :)
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

mellivora

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Re: NORD Research Grant
« Reply #96 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,

Daveman

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Re: NORD Research Grant
« Reply #97 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.....
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!

mellivora

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Re: NORD Research Grant
« Reply #98 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)?

Stef

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Re: NORD Research Grant
« Reply #99 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.

mellivora

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Re: NORD Research Grant
« Reply #100 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.

Habibou

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Re: NORD Research Grant
« Reply #101 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  :)
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

Stef

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Re: NORD Research Grant
« Reply #102 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) 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/.  They provide this UK email address as a contact for potentially getting a disorder listed -- 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.

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 -- 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.

mellivora

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Re: NORD Research Grant
« Reply #103 on: September 24, 2011, 05:07:51 AM »
Thanks nordnurse,
This is great information. I'll get on it.

mellivora

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Re: NORD Research Grant
« Reply #104 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.
« Last Edit: September 26, 2011, 10:37:38 AM by mellivora »