Author Topic: NORD Research Grant  (Read 136361 times)

Daveman

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Re: NORD Research Grant
« Reply #210 on: December 18, 2013, 03:06:53 PM »
Amijgoro, don't be concerned, everything is proceeding perfectly!

Yeah, formalities more than anything.

All grants had been reduced to three finalists, who submited detailed applications. Then they were re-scored, because the full application has all the detail, not just a summary.

Then once the finalist has been chosen, as a formality, they just have to make sure that he is still ready. (No-one on the team got sick or heaven forbid,
died or whatever). Those kind of formalities. If (s)he made a formal application only a short time before, it is not likely that they would not be available barring some
disaster.

Waiting is painful. Hopefully they will let us know VERY soon!!

« Last Edit: December 18, 2013, 03:24:57 PM by Daveman »
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!

amijgoro

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Re: NORD Research Grant
« Reply #211 on: December 18, 2013, 03:42:11 PM »
Thank you Stef, for your words of measurement  :)

demografx

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Re: NORD Research Grant
« Reply #212 on: December 18, 2013, 08:02:18 PM »
Daveman and I have just been in touch with NORD and we expressed our concerns about the RFP delay.

« Last Edit: December 18, 2013, 08:11:22 PM 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

demografx

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Re: NORD Research Grant
« Reply #213 on: December 20, 2013, 06:59:51 PM »
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!

Barry Komisaruk, PhD from Rutgers University in New Jersey, is the award recipient and the Principal Investigator for the first formal POIS study. He will be working in conjunction with an MD from Rutgers.

The research will focus on fMRI's in men with POIS, will include control subjects for comparison, and will examine brain function before, during and after orgasm.

The purpose of the study is to observe reactions and structural changes that may be occurring in the brains of POIS sufferers -- changes which explain the severe cognitive impairments of POIS, and also potentially explain the general physical reactions as a whole (pain, headache, severe fatigue, as examples).

If brain reactions are found, this will lead to determining the cause of POiS -- but more importantly -- may well elucidate treatments that are available now-- to counteract these changes.

Landmark study!!!!  More to follow!!!!
« Last Edit: December 20, 2013, 10:15:59 PM 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

demografx

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Re: NORD Research Grant
« Reply #214 on: December 20, 2013, 07:46:28 PM »


Available @ Amazon
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: NORD Research Grant
« Reply #215 on: December 20, 2013, 07:47:21 PM »
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!

Excellent news Demo!

Thanks everybody for contributing to do POIS Research a reality!

We could say it's one of the best Xmas presents we could have.

Happy Xmas and happy New Year!!!

Regards,
Mat



demografx

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Re: NORD Research Grant
« Reply #216 on: December 20, 2013, 11:38:38 PM »
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!

Excellent news Demo!

Thanks everybody for contributing to do POIS Research a reality!

We could say it's one of the best Xmas presents we could have.

Happy Xmas and happy New Year!!!

Regards,
Mat




Perfect way you celebrate this, mat780!!!!!
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 #217 on: December 21, 2013, 06:12:43 PM »

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

devastated

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Re: NORD Research Grant
« Reply #218 on: December 26, 2013, 04:59:41 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.

Chris

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Re: NORD Research Grant
« Reply #219 on: December 26, 2013, 06:09:15 AM »
Great news guys!
I suggest everyone keep calm and patient until good results start to arrive.
There will be light..Thanks to everyone, who contributed to make this real.
If we keep united like this then we will beat POIS.
Happy holidays !

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