Author Topic: NORD Research Grant  (Read 130811 times)

demografx

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Re: NORD Research Grant
« Reply #60 on: June 08, 2011, 07:10:26 PM »

Where can I donate to The POIS Research Fund online?

Please donate here:
http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

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

rock27

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Re: NORD Research Grant
« Reply #61 on: June 09, 2011, 02:38:45 PM »
When the international credit card option is available on NORD, I will donate $ 1,000.


demografx

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Re: NORD Research Grant
« Reply #62 on: June 09, 2011, 05:19:54 PM »

When the international credit card option is available on NORD, I will donate $ 1,000.


Rock, 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 #63 on: June 10, 2011, 02:48:51 PM »

NORD-POIS International Option


The research fund online donation site can now accept international donations.  NORD received two today (not POIS) -- one from London, the other from Australia.

Go to:  
http://rarediseases.org/about/support/research-donations

Write street address, city, and country in "Address 1"


Click the drop down for State, and the word International comes up -- click that.

The rest is self-explanatory.

THANK YOU, STEFANIE!
« Last Edit: June 10, 2011, 03:02:04 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 #64 on: June 13, 2011, 02:14:02 PM »

Hey brave souls! [;D]

Rock27 and Martin88 both had problems on the international donations page at N O R D over the weekend, even though "N O R D  IT" had indicated that it was tested and working.

Daveman and I have about 40 EMails each back and forth with people at N O R D, from the site programmer all the way up to the CEO. At 10:01, we had set a limit of 10:00, we received a message that the system was now operational.

Stefanie is sick at home (over this I might add). Daveman didn't get to sleep until about 05:30 AM!
I had to go take a walk to "settle down", so I send this note as I walk! (iphone)

Please, any more problems, (let's hope not) report them immediately via PM please. Let's hope that this time it's true and the system is functional.

« Last Edit: June 13, 2011, 02:37:27 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

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Re: NORD Research Grant
« Reply #65 on: June 13, 2011, 05:04:26 PM »
As soon as the international way of donation is efficient, I want to start with a 100$ donation and then see how the 33 500 $ are reached to put more money in the bank  ;D
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

demografx

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Re: NORD Research Grant
« Reply #66 on: June 13, 2011, 07:54:03 PM »

As soon as the international way of donation is efficient, I want to start with a 100$ donation and then see how the 33 500 $ are reached to put more money in the bank   ;D


Habibou, thank you!!

« Last Edit: June 13, 2011, 08:06:45 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 #67 on: June 13, 2011, 09:03:18 PM »
Just a note on the international donation facility at NORD!

Well I have to say, they know who we are!! This facility was new, and had a few last kinks, although more than anything it was erring on the safe side. But all's well now, they say.

There should be no more problems, but IF there are, any error would be tagged with a special error log code, which helps them follow up. Should you have problems, report that number to the webmaster and they will get you straightened away. Follow up with a PM to us.

Daveman should be posting a new total tomorrow.
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

B_Daniel

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Re: NORD Research Grant
« Reply #68 on: June 14, 2011, 12:17:08 AM »

BIG THANKS to rock27 for extracting all emails from our POIS Survey Database. These names will be added to Martin88's work in progress of extracting usernames from this forum.

All names will be mailed a plea to donate to our NORD-POIS Research Fund!


rock 27 and Martin88 - I just wanted to second this comment and point out how crucial of a task that was!

Personally, I'm excited for Daveman to update the research fund total tomorrow.  that's def important to do before we PM all these members - so we display a decent sized pot of money and prove the viability of this research grant goal of ours.   

demografx

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Re: NORD Research Grant
« Reply #69 on: June 17, 2011, 01:27:22 PM »






I'd like to say I intend to donate to this fund and that it seems to be an incredibly worthy investment of money.



Counterpoints, thank you for the pledge AND the sentiment!!





« Last Edit: June 17, 2011, 01:39:00 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 #70 on: June 17, 2011, 09:43:00 PM »



I gave 100$ for the POIS fund.


Martin, 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 #71 on: June 21, 2011, 11:20:38 PM »




I just made a donation to NORD. Keep up the good work everyone!


Hoping, 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

Daveman

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Let's Start Finding A Cure for POIS - - NOW!
« Reply #72 on: June 23, 2011, 08:16:32 AM »
Let's Start Finding A Cure for POIS - - NOW!

(400+ PM's and emails will go out Monday to everyone who registered or surveyed with us at both forums. Since 2007)

Dear Friends and Fellow POIS Sufferers,

 

On February 18, 2007 the first post about our struggle with POIS appeared on The Naked Science Forum, an online science discussion forum that includes science, medicine and technology news.  It was John21 (now a Senior Member on NSF) who took that first brave leap into the online world of POIS.  Others describing their unusual and very disturbing symptoms of POIS (a term described by a Dutch researcher in 2002), immediately followed.  And so, the first POIS forum was born.

 

Since that first post, 580 pages of posts detailing the POIS experience have been filled.  We have documented our symptoms, our interactions with the medical profession (often very demoralizing and disappointing), medications and/or supplements that either made us feel better, albeit temporarily, or made us feel worse.  So besides supporting each other while in the throes of a very isolating disorder, we collected specific and intricate data, often of a very personal nature, hoping that one day we’ll help find a cure for this dreadful condition.

 

Some of us went as far as to make lab rats of ourselves, trying concoctions and physician-prescribed medications that did us no good.

 

And we’ve also relied upon humor!  Yes -- humor helps invaluably when things seemed so desperate.

 

As time passed, we realized the need for a forum of our very own, where ideas could be documented by subject, and where the forum was ours and ours alone.  Daveman, another Senior Member, painstakingly designed this new forum, www.POISCenter.com .  While it is still a work in progress, it is the one and only online forum specifically dedicated to supporting others with POIS.

 

As most of you know, there is precious little research on POIS.

 

We, as a group, are going to change that!!

 

We have affiliated ourselves with the National Organization for Rare Disorders (NORD), www.rarediseases.org , a non-profit organization that is working very closely with us to find the world's best medical/scientific minds help us find the cause, treatments, and a  cure for POIS. And by "best" I mean not only brilliant academic researchers with sterling academic credentials, but who also posses two critical ingredients: Passion and Compassion. On Tuesday, June 28, 2011, you can view our group’s link on the NORD site at http://rarediseases.org/rare-disease-information/rare-diseases/viewIndex?tab=P&query_start=51

 

The starting point is for us to fund a POIS Research Grant, with NORD's help. Please read this very brief summary of the research program and our growing determination to do what it takes to fund our first research grant -- http://poiscenter.com/forums/index.php?topic=125.0

 

 

In only two weeks we have already collected more than $2,250.00.  But we need a total of  $33,500.  This is where you come in.

 

The rest of the science world will eventually take POIS dead-seriously, but it's up to US to first put the wheels in motion and show them solid, concrete, medical, peer-reviewed evidence of our disorder.

 

That is the intent of the Research Grant program, and of the funding of our first POIS grant.

 

So, PLEASE...donate what you can to our research grant fund!

 

Please donate here:

http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

 

The past 35-plus years of our other fine moderator's life, "Demografx" have been filled with the agony of POIS. But YOU have made it all meaningful for him and us  by making us "POIS friends" and allowing us to help you in our modest efforts to our cause.

 

And--if he hadn't listened to YOUR advice on our precious forums, he would most certainly not have experienced a miraculous 80% POIS-relief for his specific symptoms! As Moderator, he received so much in return from the forum members! : -)

 

Please jump on the bandwagon with us, and donate whatever you are able to.  No donation is too small!

 

Together we are going to cure POIS!!!

 

Best wishes and best regards, everyone!

Yours,

daveman
 
« Last Edit: June 23, 2011, 03:50:14 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!

demografx

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Re: NORD Research Grant
« Reply #73 on: June 25, 2011, 11:36:15 PM »


I donated $100 towards the NORD research fund.


John, our first and longest-standing member, thank you very much !!
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

Daveman

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Re: NORD Research Grant
« Reply #74 on: June 26, 2011, 08:06:22 PM »
We are officially in the NORD (National Organization for Rare Disorders) database. The link to our entry is http://www.rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail

The presence of our data here will be very helpful on various levels, including greater exposure to potential researchers and donors alike.

Also, we are aware of the difficulty involved in finding our forums. With this entry, because of the high number of visits that NORD receives it will help capture even more new members, who are most important to us. Each one will be one step closer to real relief.

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!