Author Topic: NORD Research Grant  (Read 137083 times)

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #180 on: December 12, 2012, 08:36:39 PM »
Most may remember "Squiqqy" in Laverne and Shirley.. he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

Click here to PLEASE donate:



 Please Click H E R E
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

  • AdminRareDisease
  • Newbie
  • *****
  • Posts: 29
Re: NORD Research Grant
« Reply #181 on: January 06, 2013, 09:49:30 AM »
I've just donated $100. I hope more POIS Heroes join me.

This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort today we can change our lives.

How much would you pay to be POIS free forever???

I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life that I want.

Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!


Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!

You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!

As Demo said in another post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?

Join the POIS Heroes movement by donating today!

Thanks,
Mat
« Last Edit: January 06, 2013, 11:24:45 AM by mat780 »

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #182 on: January 06, 2013, 12:44:33 PM »

I've just donated $100. I hope more POIS Heroes join me.

This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort today we can change our lives.

How much would you pay to be POIS free forever???

I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life that I want.

Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!


Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!

You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!

As Demo said in another post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?

Join the POIS Heroes movement by donating today!

Thanks,
Mat

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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #183 on: January 06, 2013, 12:47:38 PM »

I've just donated $100.
,
Mat


Thank you, Mat, for your REPEAT DONATION!!!
« Last Edit: January 06, 2013, 12:51:21 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

Observer

  • Global Moderator
  • Sr. Member
  • *****
  • Posts: 386
Re: NORD Research Grant
« Reply #184 on: January 06, 2013, 07:58:17 PM »
I'll make an extra-effort before our March deadline. Everyone should give something, we really have the power to achieve our goal before this deadline and the moment to act is now(between now and 3rd week of March). Don't wait for other people, you and only you have the power to make a difference !

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #185 on: January 06, 2013, 10:39:58 PM »
Observer, it will happen soon. People are responding with repeat donations!

Newcomers will come along soon!
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #186 on: March 05, 2013, 03:03:18 PM »


In February,  $2,542.90 was raised.
 
That gives us $33,677.00 since the balance of Feb 13 ($31,937.00) plus $1,240.00 (amijgoro) plus another $800.00 came in, to which Amij does not contribute.


For......... a grand total of....................... $33,677.00 + $800.00       =     $34,477.00 (we benefit by going over $minimum)

« Last Edit: March 05, 2013, 09:57:49 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

Habibou

  • Lab1
  • Sr. Member
  • **
  • Posts: 261
Re: NORD Research Grant
« Reply #187 on: March 16, 2013, 01:17:13 PM »
What a great thing !
When does the research start?
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

Stef

  • Administrator
  • Sr. Member
  • *****
  • Posts: 377
Re: NORD Research Grant
« Reply #188 on: March 16, 2013, 07:57:43 PM »
What a great thing !
When does the research start?

Hello, Habibou!

The grant (Request for Proposal -- "RFP") will be posted on our website, along with NORD's other RFPs, at the end of March (this month). We will also be sending MANY individual emails to potential applicants about your grant.

There will be a lot of processes going on between NORD's Medical Advisory Committee (MAC) and the applicants.  Nine to ten months later, around late November 2013, the award recipient will finally be chosen by NORD's MAC.

So -- the research will begin in around nine-ten months.  I know that it sounds like a long time -- but it's the only way to find the right and best researcher.

I'll keep you all posted as things progress -- you'll be able to see your RFP online when NORD posts it, and all of you will be able to share it, pass it on to others, to your own physiciains. etc.

I hope that answered your question, Habibou.

Stef

Habibou

  • Lab1
  • Sr. Member
  • **
  • Posts: 261
Re: NORD Research Grant
« Reply #189 on: March 18, 2013, 06:42:03 PM »
Thank you Stef ! I am aware of it now.. better to wait some months and have the accurate researcher  :)
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #190 on: March 19, 2013, 08:04:52 PM »
I have been waiting over 30 years for some real answers, I can wait a few more months :)
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

bjameshill

  • Newbie
  • *
  • Posts: 21
Re: NORD Research Grant
« Reply #191 on: March 20, 2013, 10:55:55 PM »
Just donated $250.  I know its too late for the first grant...just found the site.  Plan to do it again.  Couple of questions:  Are the research cycles yearly? Would there be any value in funding another research grant with a different company?
22 years POIS-like symptoms. It's been a long road...

Stef

  • Administrator
  • Sr. Member
  • *****
  • Posts: 377
Re: NORD Research Grant
« Reply #192 on: March 21, 2013, 03:30:52 PM »
Just donated $250.  I know its too late for the first grant...just found the site.  Plan to do it again.  Couple of questions:  Are the research cycles yearly? Would there be any value in funding another research grant with a different company?

Hello, bjameshill --

It's not too late for your donation to go to this year's POIS grant.  The cut-off date is March 22, 2013. So, your donation will go to this 2013 grant. :)

To answer your questions --
 
(1) In general, NORD's grants are posted on a once/year cycle, in March.  There have been a few times where patient groups reached their funding goal in July or August, and were very anxious to get started.  If there are at least two grants ready at that time (for two different disorders), we'll post a second cycle of grants. 
It takes a lot of time and effort to post a second grant cycle, and includes requesting our Medical Advisory Committee to put in those extra hours of review. (They score the proposals on a voluntary basis -- they aren't paid to do this.)  So -- we try to keep it to a once/year event.

(2) There's always value in looking into research-funding through other organizations or companies!  (NORD isn't a private company -- we're a non-profit organization, just FYI.) 

Stef

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5219
  • All of us working together to defeat POIS!
Re: NORD Research Grant
« Reply #193 on: March 21, 2013, 03:34:28 PM »
Thank you for clarifying this, 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

bjameshill

  • Newbie
  • *
  • Posts: 21
Re: NORD Research Grant
« Reply #194 on: March 21, 2013, 10:23:00 PM »
Thanks Stef.  What a great service NORD provides!

22 years POIS-like symptoms. It's been a long road...