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Author Topic: POIS RFP, 2013  (Read 92145 times)

Stef

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POIS RFP, 2013
« on: April 03, 2013, 01:51:58 PM »
Hi, Everyone!

We've just posted our 2013 RFPs (Requests for Proposals).  

I want to explain to you all that research RFPs are purposely written in a somewhat brief, broad style -- so as to attract a wide cross-section of specialists and scientists.

Your RFP mentions the more prominent symptoms of POIS, and is also written in a way that will interest researchers from varying fields of medicine. If a particular symptom that some of you are struggling with is not mentioned in the RFP, please don't think that it's not considered important!  

Since we don't know what POIS is, the field is WIDE OPEN!!

I did show the RFP to demografx and Daveman, and both were comfortable with the final version.  They will be compiling some important data in the near future, culled from your posts and surveys, and I'll be forwarding that data to NORD's Medical Advisory Committee (MAC).  This will provide NORD's MAC with information about POIS that cannot be found anywhere but on your forum and the NSF POIS thread. This data will provide more specific information about the symptoms of POIS, how POIS manifests itself, and about some of the treatments that have been found to be helpful to some of you.  

Here's the link to the POIS RFP -- http://www.rarediseases.org/docs/research-grants/POIS.doc.

Here's the link to our RFP page, which shows all of the research grants being offered this year -- http://www.rarediseases.org/medical-professionals/research-grants/rfps

Besides posting this on NORD's website, we'll also be sending many individual emails and e-blasts to researchers who we feel might be good candidates.  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.

Congratulations!!

Stef
« Last Edit: December 09, 2013, 07:36:28 AM by Daveman »
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demografx

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Re: POIS RFP, 2013
« Reply #1 on: April 03, 2013, 03:42:02 PM »
Thank you, Stef!

Your work and dedication on our behalf is incredible!


« Last Edit: April 03, 2013, 04:12:52 PM by demografx »
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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

Limejuice

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Re: POIS RFP, 2013
« Reply #2 on: April 03, 2013, 04:43:16 PM »
The RFP looks great! Thanks Steph and team!
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demografx

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Re: POIS RFP, 2013
« Reply #3 on: April 04, 2013, 01:18:52 AM »
Quote from: nordnurse on April 03, 2013, 01:51:58 PM

Here's the link to the POIS RFP -- http://www.rarediseases.org/docs/research-grants/POIS.doc.

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.

Congratulations!!

Stef


I sent the links to my endocrinologist and primary care physician, who helped me fight POIS successfully.
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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 #4 on: April 04, 2013, 10:31:41 AM »
Has anyone sent this to Dr. Waldinger yet?
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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

Ccconfucius

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Re: POIS RFP, 2013
« Reply #5 on: April 04, 2013, 12:29:40 PM »
The symptoms description part was perfect. It touch all the main point.
Hopefully there some excited scientist willing to work with POIS.
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demografx

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Re: POIS RFP, 2013
« Reply #6 on: April 04, 2013, 02:30:22 PM »
CertainlyPOIS, I have no doubt that will happen. :)
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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

mat780

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Re: POIS RFP, 2013
« Reply #7 on: April 04, 2013, 05:16:28 PM »
Thank you Stef, Demo and Dave!
Thank you to all the people that shared their time, work and money to make POIS research a reality!
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demografx

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Re: POIS RFP, 2013
« Reply #8 on: April 04, 2013, 06:15:21 PM »
Quote from: mat780 on April 04, 2013, 05:16:28 PM
Thank you Stef, Demo and Dave!
Thank you to all the people that shared their time, work and money to make POIS research a reality!


Thank you, Mat!!

Your POIS websites and financial, emotional support: you are a #1 contributor to POIScenter.com!

Mat780's teriffic POIS resources can be found here:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

At the above site: look for the followling links below to Mat's websites!

1. "Click here to see Mat780's excellent YouTube POIS Channel.   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".   "
http://m.youtube.com/#/user/POISchannel/videos?&desktop_uri=%2Fuser%2FPOISchannel%2Fvideos

2. "Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

"The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed."
« Last Edit: April 04, 2013, 07:26:21 PM by demografx »
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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 #9 on: April 07, 2013, 12:22:27 AM »
Quote from: nordnurse on April 03, 2013, 01:51:58 PM


Here's the link to the POIS RFP -- http://www.rarediseases.org/docs/research-grants/POIS.doc


                     

                   == OR ==



TINY URL (LINK) FOR POIS RFP:
(copy/paste/send)
http://tinyurl.com/bwhbn5k



Quote from: nordnurse on April 03, 2013, 01:51:58 PM

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.


« Last Edit: April 10, 2013, 10:18:18 PM by demografx »
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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 #10 on: April 10, 2013, 10:47:25 AM »
Stef ("nordnurse") informs us "Thousands -- literally -- receive "NORD" google alerts. :-)  "

TODAY!


---------- Forwarded message ----------
From: Google Alerts <googlealerts-noreply@google.com>
Date: Wed, Apr 10, 2013 at 12:37 AM
Subject: Google Alert - post orgasmic illness syndrome
To: demografx


Web   1 new result for post orgasmic illness syndrome
 
POIS - National Organization for Rare Disorders
Announces. Research Seed Grant Funding for one, one-year grant ($31,000) for. Post-Orgasmic Illness Syndrome (POIS). Submission Deadline: May15, 2013 ...
www.rarediseases.org/docs/research-grants/POIS.doc
« Last Edit: April 10, 2013, 11:58:48 AM by demografx »
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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 #11 on: April 10, 2013, 09:09:06 PM »
Quote from: Vincent M on April 04, 2013, 10:31:41 AM
Has anyone sent this to Dr. Waldinger yet?

Send it to him!

If it's already been sent, multiple copies can't hurt anything. :)
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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 #12 on: April 11, 2013, 02:39:23 PM »
This is the email I sent to Dr. Waldinger just now:

Hello Dr. Waldinger,

This is concerning POIS. Recently our group has raised enough money to fund a small research study($31,000 seed grant) for POIS through the National Organisation 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. Applications are being accepted now until the submission deadline on May 15, 2013. 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: http://www.rarediseases.org/docs/research-grants/POIS.doc

I just realized it's only about a month until the deadline.

-Vincent
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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 #13 on: April 11, 2013, 08:24:00 PM »
Vincent, excellent letter!

Perhaps other members can adapt it to their own passalongs!

Best regards,

Demo
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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

Clycos

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Re: POIS RFP, 2013
« Reply #14 on: April 12, 2013, 12:52:33 AM »
Awesome email! Hope that money is put to good use.
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devastated

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Re: POIS RFP, 2013
« Reply #15 on: April 12, 2013, 04:37:04 AM »
Good job! The symptom description is quite accurate.
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demografx

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Re: POIS RFP, 2013
« Reply #16 on: April 12, 2013, 05:18:25 PM »
This is the most exciting/hopeful time I've seen since the forums began in 2007!
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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

asdfdoc

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Re: POIS RFP, 2013
« Reply #17 on: April 12, 2013, 11:41:04 PM »
very nice... one day, it's my goal to do research on POIS... I wanna contribute! Is there anything other than donation that I can do to help as in the research aspects? I am a PhD fellow with an NIH grant!
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demografx

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Re: POIS RFP, 2013
« Reply #18 on: April 16, 2013, 01:17:36 PM »
Quote from: asdfdoc on April 12, 2013, 11:41:04 PM
very nice... one day, it's my goal to do research on POIS... I wanna contribute! Is there anything other than donation that I can do to help as in the research aspects? I am a PhD fellow with an NIH grant!

Wonderful and inspiring goal.

My urologist - affiliated with a major research hospital - has already expressed interest in applying to the RFP!

« Last Edit: April 16, 2013, 06:16:29 PM by demografx »
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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 #19 on: April 19, 2013, 11:01:38 PM »
We did it! $31,000 POIS Grant!



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

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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
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