Author Topic: NORD Research Grant  (Read 156867 times)

Daveman

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Re: NORD Research Grant
« Reply #220 on: December 26, 2013, 07:20:31 AM »
Sounds promising. I hope he examines as many sufferers as possible. The wider the range, the better. Separate teams of people with mainly mental / mainly physical symptoms could perhaps help to faster establish a specific pattern.

Should look at:

Onset, during and in the immediate minutes of ejaculation
What happens with different levels of stimulation, pre-ejaculation for those that get POIS without full orgasm.
Should see what happens with niacin, for those for whom it helps and those that it doesn't
Effects of other relief programs
Should look at a progression through the 5 to 10 days recording symptoms against results.
Should of course test the same things with people who do NOT have POIS.

Etc!


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!

demografx

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Re: NORD Research Grant
« Reply #221 on: February 06, 2014, 03:24:17 PM »

FROM NORD

On Feb 6, 2014, at 12:11 PM, Jason Barron at NORD wrote:

Dear Demo and Daveman,
 
The announcements for 2013 NORD research grant award recipients have been posted on NORD’s website.  For easier navigation and retrieval, I’m including a link to the updated content, here:  https://www.rarediseases.org/medical-professionals/research-grants/recipients.  Please note that the announcement for the POIS category indicates the sponsorship of the POIS Forum.  If you have any other questions or concerns about the grant award and its associated research project, please feel free to contact me at your convenience.
 
Kind regards,
Jason
 
---
Jason Barron
Research Administrator
Associate Director, Medical and Scientific Affairs
National Organization for Rare Disorders (NORD)
1779 Massachusetts Avenue NW, Suite 500
Washington, DC  20036
Email: jbarron@rarediseases.org
T  (202) 588-5700 x109
F  (202) 588-5701
M (203) 482-3398

This e-mail and any attachments may contain confidential and privileged material for the sole use of the intended recipient. Any review, use, distribution or disclosure by others is strictly prohibited. If you are not the intended recipient (or authorized to receive for the recipient), please delete the e-mail, along with any attachments, without copying or disclosing it and notify the sender by reply e-mail immediately. Thank you.
 
 
 
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 #222 on: February 11, 2014, 09:55:40 PM »

FROM STEF RE TRAVEL TO NEWARK!

Hi All,

The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult. 

It takes ~ three weeks for them to make arrangements, FYI.

They've been around for years and are a reliable, trustworthy non-profit organization --

National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767

I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.

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