Author Topic: POIS RFP, 2013  (Read 64663 times)

demografx

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Re: POIS RFP, 2013
« Reply #30 on: June 06, 2013, 09:29:01 AM »
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
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: POIS RFP, 2013
« Reply #31 on: June 06, 2013, 09:41:49 AM »
Excellent guys, It's an exciting time for all of us, don't you think?  ;D ;D

Absolutely!  ;D ;D
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: POIS RFP, 2013
« Reply #32 on: June 09, 2013, 08:35:41 AM »


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.

[
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: POIS RFP, 2013
« Reply #33 on: June 09, 2013, 08:43:51 AM »

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

« Last Edit: June 09, 2013, 08:47:29 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

Vincent M

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Re: POIS RFP, 2013
« Reply #34 on: June 18, 2013, 06:44:01 PM »
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
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

demografx

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Re: POIS RFP, 2013
« Reply #35 on: June 18, 2013, 08:09:41 PM »
Thanks, Vincent M!
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

Freedom4everyone

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Re: POIS RFP, 2013
« Reply #36 on: June 26, 2013, 11:38:48 PM »
So, I'm new here and I don't quite understand: are donations for research still needed?
POIS 20+ yrs. 0-5day reactions, ALL hell-symptoms. B-100 complex + extra Niacin = 1ea in morn + 1ea in eve. 3 EXTRA dosages on each of 3 days after wet-dream. Masturbate maybe ~6x per YEAR. Record abstinence 12-18 mos (can't remember). It gets easier, gents.
* POIS HITS? I HIT HARDER! I WILL WIN. *

Daveman

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Re: POIS RFP, 2013
« Reply #37 on: June 28, 2013, 06:49:18 AM »
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.

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!

Freedom4everyone

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Re: POIS RFP, 2013
« Reply #38 on: June 28, 2013, 07:45:05 PM »
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.
POIS 20+ yrs. 0-5day reactions, ALL hell-symptoms. B-100 complex + extra Niacin = 1ea in morn + 1ea in eve. 3 EXTRA dosages on each of 3 days after wet-dream. Masturbate maybe ~6x per YEAR. Record abstinence 12-18 mos (can't remember). It gets easier, gents.
* POIS HITS? I HIT HARDER! I WILL WIN. *

demografx

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Re: POIS RFP, 2013
« Reply #39 on: June 29, 2013, 09:17:41 AM »
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
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: POIS RFP, 2013
« Reply #40 on: June 30, 2013, 04:17:27 PM »
You have received more than just a few applications for your POIS grant!!! These applications are SERIOUS!!

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.

To me, this is the happiest news ever since the forums started in 2007! :) :) :)
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

Defsync

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Re: POIS RFP, 2013
« Reply #41 on: July 10, 2013, 09:45:37 PM »
IF THE RESEARCH GETS TO THE POINT.....

where they need to poke and prod and disect a live patient.... even as far as brain tissue, i will volunteer. free of charge.

seriously, you got any other live people who will throw themselves on a slab and let em slice n dice for research POIS purposes?

so keep me in mind. i am offering.

Freedom4everyone

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Re: POIS RFP, 2013
« Reply #42 on: July 10, 2013, 10:00:02 PM »
Um, i doubt you'd have to get slice'n'diced for anything.
You'd probably just have to [mod edit:] masturbate once in a while while trying different meds or treatments.
Which, sounds fine for everyone in the world...except us POIS dudes....
« Last Edit: July 16, 2013, 08:50:59 PM by demografx »
POIS 20+ yrs. 0-5day reactions, ALL hell-symptoms. B-100 complex + extra Niacin = 1ea in morn + 1ea in eve. 3 EXTRA dosages on each of 3 days after wet-dream. Masturbate maybe ~6x per YEAR. Record abstinence 12-18 mos (can't remember). It gets easier, gents.
* POIS HITS? I HIT HARDER! I WILL WIN. *

demografx

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Re: POIS RFP, 2013
« Reply #43 on: July 22, 2013, 04:50:20 PM »

We did it! $31,000 POIS Grant!



Pass it on! Show the world!
http://tinyurl.com/bwhbn5k


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: POIS RFP, 2013
« Reply #44 on: July 22, 2013, 04:58:33 PM »

IF THE RESEARCH GETS TO THE POINT.....

where they need to poke and prod and disect a live patient.... even as far as brain tissue, i will volunteer. free of charge.

seriously, you got any other live people who will throw themselves on a slab and let em slice n dice for research POIS purposes?

so keep me in mind. i am offering.

Defsync, you have been offering your services to the POIS cause for many years now.

It is greatly appreciated!! :)



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