Author Topic: Do we want to fund a new POIS Research Grant with NORD?  (Read 5864 times)

demografx

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Do we want to fund a new POIS Research Grant with NORD?
« on: September 28, 2016, 11:17:09 AM »



THIS IS POSTED FOR OPEN DISCUSSION


Cross-posted from
http://poiscenter.com/forums/index.php?topic=2361.msg19720#msg19720



Is there right now a way to donate money for the research ?



On Sep 28, 2016, at 8:26 AM, Allison/NORD wrote:

Hello Demo,

It would be wonderful if we could fund another POIS research grant!  There is a $35,000 minimum for issuing a grant ($30,000 for the grant award, plus a $5,000 administrative fee).

Donations can be made to NORD's POIS research fund by navigating to https://salsa3.salsalabs.com/o/51076/donate_page/research-program and selecting POIS from the research fund drop-down menu.

Please let me know if you have any additional questions!

Best,
Allison




National Organization for Rare Disorders

POISCenter's "partner" in POIS research
https://rarediseases.org




« Last Edit: September 29, 2016, 12:57:29 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

Jimmy

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Re: New POIS Research Grant with NORD?
« Reply #1 on: September 28, 2016, 11:34:43 AM »
Nice idea ..as I know we are around 600 registered members.

Roughly speaking 50 $ each will collect 30,000 $.

I'm ready to participate and I see we should try to spread the link to everyone who could help in this.

demografx

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Re: New POIS Research Grant with NORD?
« Reply #2 on: September 28, 2016, 11:36:19 AM »
Thanks, Jimmy!

Don't forget, we already did it once before :)
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

MirkoThiel0

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #3 on: September 28, 2016, 12:35:21 PM »
i could try to connect Rocketbeans.tv again, the therapist out of the show TheraThiel did say he would welcome me again in his show and maybe some of the people are wiling to spende for us.
(the last time https://youtu.be/Z_4gIrc-zuI?t=25m47s)
« Last Edit: September 28, 2016, 12:37:18 PM by MirkoThiel0 »

Jimmy

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #4 on: September 28, 2016, 12:50:27 PM »
Can we prepare some material and use crowd funding sites like:
https://experiment.com/

demografx

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #5 on: September 28, 2016, 01:04:59 PM »
Excellent idea about Rocketbeans.tv
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: Do we want to fund a new POIS Research Grant with NORD?
« Reply #6 on: September 28, 2016, 01:08:14 PM »
Can we prepare some material and use crowd funding sites like:
https://experiment.com/
Wow. Never knew this existed!
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: Do we want to fund a new POIS Research Grant with NORD?
« Reply #7 on: September 28, 2016, 01:16:53 PM »
THIS IS POSTED FOR OPEN DISCUSSION


Cross-posted from
http://poiscenter.com/forums/index.php?topic=2361.msg19720#msg19720



Is there right now a way to donate money for the research ?



On Sep 28, 2016, at 8:26 AM, Allison/NORD wrote:

Hello Demo,

It would be wonderful if we could fund another POIS research grant!  There is a $35,000 minimum for issuing a grant ($30,000 for the grant award, plus a $5,000 administrative fee).

Donations can be made to NORD's POIS research fund by navigating to https://salsa3.salsalabs.com/o/51076/donate_page/research-program and selecting POIS from the research fund drop-down menu.

Please let me know if you have any additional questions!

Best,
Allison

FYI...Shorter link for donations:
http://tinyurl.com/jhs48va


« Last Edit: October 02, 2016, 01:12:14 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: Do we want to fund a new POIS Research Grant with NORD?
« Reply #8 on: September 28, 2016, 03:23:25 PM »

cross-posted from MirkoThiele10's "how to donate...?" thread:
http://poiscenter.com/forums/index.php?topic=2361.msg19729#msg19729


could anyone tell me what exactly happend with the old refund...?

I think the very small "refund" is held by NORD in 'funding for a 2nd Grant'. About $200 USD if I recall correctly.
« Last Edit: September 28, 2016, 04:10:37 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: Do we want to fund a new POIS Research Grant with NORD?
« Reply #9 on: September 28, 2016, 03:56:26 PM »

could anyone tell me what exactly happend with...the Study from the doctor ?
The latest Study news can be seen at "NORD...interim..." thread:

http://poiscenter.com/forums/index.php?topic=2086.msg19712#msg19712
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

MirkoThiel0

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #10 on: September 29, 2016, 10:16:08 AM »
thank you for the information.

Jimmy

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #11 on: September 30, 2016, 02:46:54 PM »
Hi All,

Regarding the donation for the new research program, should we just use the provided link and donate? or to let forum moderators to coordinate with NORD first to initiate the donation program?

And also is there a possibility to grant forum moderators a privilege to monitor the progress of the donation process?


demografx

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #12 on: October 02, 2016, 12:12:40 AM »

Jimmy, it's all set up to accept donations, but maybe we should wait to see the rationale for the delay in the current Study before we start donating again? :)
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

Disaster

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Re: Do we want to fund a new POIS Research Grant with NORD?
« Reply #13 on: March 27, 2017, 02:38:59 AM »
I would consider getting involved if you guys would change direction of the research..
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.