NORD Research Grant

[B_Daniel]

The email that went out to everyone was superb!  Fantastic work everyone!  Let's now hope all 300 members give something   

[Stef]

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!!!

[demografx]

nordnurse, you're making me blush, but THANK YOU !!

[demografx]

You can put me down to pledge $500.

Green, thank you!!!

[Habibou]

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.

[omen]

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....

[B_Daniel]

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  .  

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!

[B_Daniel]

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.

[Daveman]

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?

[B_Daniel]

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  

[demografx]

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:

[demografx]

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  .  

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!!!

[B_Daniel]

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

[Habibou]

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 

[Daveman]

We can't change the code on NSF, but I'll look into puting a button here.

[Habibou]

Yes, I thought so for the NSF but It could be great a button on this forum at least ! 

[mellivora]

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]

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.....

[mellivora]

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]

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.