POIS RFP, 2013

[demografx]

You are also free to forward/copy and send the POIS RFP to anyone -- scientist, relative, friend, etc -- to help get word out about your grant.

[Vincent M]

Dr. Waldinger responded to my email about the grant:

"Dear Vincent,
 
Thank you very much for your e-mail and information. What a wonderful accomplishment to raise 31000 US Dollars. I will certainly try to submit a proposal as I urgently need money to continue our research on POIS.
 
I appreciate your e-mail and in case of any news, do not hesitate to send me an e-mail. Unfortunately, I am too busy with all sorts of other activities so that I have no time to follow or look at your internet website.
 
With best regards,
 
Prof. dr. Marcel D. Waldinger"

[demografx]

From Stef/"nordnurse" today:


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"Guys,

You've received some NICE [grant] applications!!!!!  :-)  

(I can't say "great applications" because I can't judge them -- and haven't even had the time yet to check them for completeness before sending them to our MAC.)

Just thought you'd want to know. :-)

Yes -- you can post --  I can't give out specifics -- can't name names or advise exactly how many applications were received.  But I can tell you  -- -- this is GREAT for rare disease RFPs -- especially one like POIS where no one knows what the hell it is!!!!!

Later!"

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Yay!!!!!
Demo

[nenexx]

From Stef/"nordnurse" today:


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"Guys,

You've received some NICE [grant] applications!!!!!  :-)  

(I can't say "great applications" because I can't judge them -- and haven't even had the time yet to check them for completeness before sending them to our MAC.)

Just thought you'd want to know. :-)

Yes -- you can post --  I can't give out specifics -- can't name names or advise exactly how many applications were received.  But I can tell you  -- -- this is GREAT for rare disease RFPs -- especially one like POIS where no one knows what the hell it is!!!!!

Later!"

=  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =

Yay!!!!!
Demo

GREAT!

[demografx]

It's exciting, nenexx

[Bulbo]

was waiting for some developments
very happy to hear it

[demografx]

It's sooo unfair that friends of mine can have as much sex as they want and get no symptoms!

Don't think that your friends have no problems. They just got lucky with POIS.  Who knows what "nightmares" some of your friends have in other parts of their lives, medical and otherwise. You don't know because people don't usually "brag" about their Special Miseries.

Comparing to others is not usually helpful, whether you're better or worse.

Just be the best Prancer you can be!!

[demografx]

FROM STEF/"nordnurse" Today

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"I received an email from a researcher this past Friday -- asking if it was too late to apply for the POIS grant. He'd only just found out about the grant from a colleague, knew the deadline had passed, but was eager to apply.  He wasn't on our researcher list. (Often -- this is exactly what happens. Researchers apply because they hear about the RFP from a colleague -- either they collaborate, or the first one isn't interested but is passing on the information.)

I advised him to send his application -- we'd get it to our MAC.  

I'm not at all surprised at the response that the POIS grant has generated -- I had no doubts. There was never a worry about this (on my part) -- although I know that it probably had been a worry for you and the forum members.

POIS is such a vast unknown right now, and seems to involve multiple organ systems and multiple biological pathways. It's exactly the type of disorder that would interest a broad range of researchers.  I'm betting that there is one, main cause -- leading to the various, miserable symptoms that some with POIS develop and some don't develop.  But there are enough symptoms in common to definitely call it a "syndrome."

[demografx]

what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...

Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0

You can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.

[Observer]

Excellent guys, It's an exciting time for all of us, don't you think? 

[demografx]

Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP

[Stef's reply to JP below]

Hi JP and Everyone!

First of all -- to all of you -- you have received more than just a few applications for your POIS grant!!!  I'm not in a position to judge them, and am not allowed to say exactly how many, from whom, etc. (This is the general request of all researchers applying for any grant, and has become a very a strong guideline at NORD). But -- these applications are SERIOUS!! That I can comfortably tell you without breaking any of the rules.

You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.

(But that's all I can say -- better quit while I'm ahead!)

Second -- JP, don't let this experience leave you feeling hopeless or down-trodden. Don't be sorry about anything! Yes, you are going to have to "live with this nightmare," a little longer. (It really is quite a nightmare!!!!)

But POIS will be understood -- and the answers/treatment will follow -- perhaps very quickly.  (Honestly -- I just do not think you're going to be waiting long.)

Try to keep remembering -- at this moment, no one knows what POIS is!  You're all on the way to finding out through your research grant, but right now -- there's no answer -- nothing!

Dr. Waldinger, who put POIS on the map, without question would agree. No one knows what POIS is.

(I know -- I sound like a broken record!)

Without ever having communicated with Dr. Waldinger -- he is a scientist, and would agree -- there has been no sound, scientific research.  He has a hypothesis that POIS is an allergic condition -- which may or may not be on track.  

(FYI -- I write this with complete, total respect for Dr. Waldinger and his team!)

Without funding, there's no research -- and with no research, there are no answers. It's just that simple.

And now you've got the funding for the research.  

There has never before been funding for POIS research -- do you all realize this??!!!!  So many of you men on this and the other forum donated what you could -- and with the constant encouragement of demografx and Daveman -- you all pulled together and did it! Demo and Daveman never gave up on encouraging everyone -- and they both walked the walk, also!

(I think demo has amassed a secret stash of animated gifs -- just for POIS donations!)  

The question, "What is POIS" -- will likely be answered very soon.

So, JP -- and everyone -- stay strong -- and believe in your strength. Do not give up seeking treatments to tide you over until the true answers are discovered.

Please just be safe and careful while finding ways to get yourselves through this misery.

The answers are around the corner!
 
Stef

[demografx]

Excellent guys, It's an exciting time for all of us, don't you think? 

Absolutely! 

[demografx]

Everybody, we can help out the research process by going here

http://tinyurl.com/k9noay9

and telling the researchers what POIS is.

What has helped you.

What makes it worse.

This is our opportunity to have a voice.

[

[demografx]

The answers [to POIS] are around the corner!
 
Stef

[Vincent M]

Just sent this email to the doctors of the recent case study:

Hello Drs. Attia and Yasien,

This is concerning POIS. Recently our group at poiscenter has raised enough money to fund a small research study($31,000 U.S. dollar seed grant) for POIS through the National Organization for Rare Disorders(NORD) and I thought it would be a good idea to let you know in case you were interested in applying for the grant. The submission deadline was May 15, but NORD will give you an extension.The detailed information about the research grants being offered this year, including the one for POIS, is on the NORD website on the page titled Requests for Proposals, which is located at this link:

http://www.rarediseases.org/medical-professionals/research-grants/rfps

Here is the direct link to the NORD document that outlines the application procedure and other details for the POIS grant: http://www.rarediseases.org/docs/research-grants/POIS.doc

-Vincent M

[demografx]

Thanks, Vincent M!

[Freedom4everyone]

So, I'm new here and I don't quite understand: are donations for research still needed?

[Daveman]

So, I'm new here and I don't quite understand: are donations for research still needed?

This first phase of research is to establish WHAT POIS is and hopefully establish a direction. We hope that this first phase puts POIS on a MAP that the medical profession will respect.

With that will come more research, unless we are fantastically lucky to be able to actually trip over a final solution immediately.

Once this seed project has terminated, we will be open to more official government grant programs and institutional donations, however we have already accepted donations for the next grant phase, so YES, we are still accepting donations, but they will go to a second program, that may well work in parallel with other funding.

[Freedom4everyone]

Where does one contribute now: directly to NORD or somewhere else?  So is there a non-profit org established?  Then people may give more because the donations are tax-deductible.

[demografx]

Where does one contribute now: directly to NORD or somewhere else?  So is there a non-profit org established?  Then people may give more because the donations are tax-deductible.

Contributions still go to NORD for 2nd program as Daveman describes above:
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3