Author Topic: NORD Research Grant  (Read 156870 times)

Daveman

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Re: Funding a POIS research grant
« Reply #40 on: June 04, 2011, 09:19:26 AM »
Just a note on the "online donation function" at NORD.

NORD had normally accepted donations for grants manually. The "online facility" is new. AND, Demo had a couple of small problems when he donated. But the IT department reacted VERY quickly to fix the problems (related to iPhone). There shouldn't be anymore. But we wanted to mention it just in case. If there is any problem whatsoever, drop a PM to Demo or I and we'll get immediate attention.

Also in answer to other concerns about international donations etc, I copy this note from Sefanie and NORD. She said:

I'll ask on Monday about international donations to NORD.  We receive them from all over the world, but I am not sure if they can come through the website because the money might need to be converted first to US dollars. I truly don't know if that's the case, or how that works -- but will find out and get right back to you.

Since we do receive funds from all over the world,  this is not an uncommon occurrence at NORD.

FYI, if the money needs to be converted to US dollars first, then I believe that the most economical and the easiest way to do this -- and probably the most anonymous -- is to purchase a postal money order through the local post office.  There will be a modest fee (as an example, it's around $4.00 in the US to send a postal money order from here to overseas).
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Regarding the absolute anonymity, if someone wants their donations to be totally anonymous (meaning the ID is not even known to NORD), I think the postal money order route, mailed via postal mail, is the best and only choice. It's not a bad choice, by the way. It's a very good, safe choice--for anyone, in any circumstance.

Our website definitely won't accept charge card donations without all the required information. That is a given everywhere and not unique to NORD.  So, one can't do an online donation totally anonymously (anonymous to the point that NORD doesn't have the contact information of the person).  An anonymous postal money order sent via snail mail is the answer in that case.

What I said, or tried to say previously, about contacting me re: anonymity -- is related to not receiving an acknowledgement (a thank you) from NORD if a donation is made through the web site.

Thus, if someone feels that they would like to donate via the website, but doesn't want to be receiving an acknowledgment of the donation for the sake of anonymity at their end, they can feel free to contact me directly and I'll make sure nothing is ever sent.They don't need to tell me the amount of the donation, as this is kept confidential also (I have no need to know how much an individual donates).

We send these acknowledgments so that people (within the US) can use it for tax records, but we also send them simply as a "thank you" to everyone.

By the way, I learned today that we receive several anonymous donations yearly for various funds and for unknown reasons.  This is not a new concept for us.

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!

Habibou

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Re: Funding a POIS research grant
« Reply #41 on: June 04, 2011, 06:40:45 PM »
This is an excellent thing to start now we have more specific researches to do !

I agree with Vandemolen, we should gather all POIS suffers to give an equal part since we are over 200 getting this condition. 100$ each would already be a lot, and for the others who are willing to give more, it would be possible !

Of course, we can't push anybody to give money for it... but according to me, it is intelligent money investment. Indeed, we try many things , sometimes more or less expensive, with a probability to cure of 1/N (N very high sometimes). With that, we would be sure, the money would build up a serious investigation for a real finding and a possible cure (more or less easy, depending on the case found). 100$ is the price of 30 minutes with a specialist (or even a lot more) who will tell us "sorry i can't do anything for you". Then those 100$ would be wasted !  Sorry if i am messy  ;D
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

Daveman

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Re: Funding a POIS research grant
« Reply #42 on: June 04, 2011, 07:45:03 PM »
Not at all. Perfectly clear.

I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.

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: Funding a POIS research grant
« Reply #43 on: June 04, 2011, 09:24:36 PM »
Not at all. Perfectly clear.

I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.


Reminds me when I got a get-well card after my open-heart surgery, it included a funny mention of my good deed in helping the surgeon get that "dream" hi-fi system for his den.  ;D
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: Funding a POIS research grant
« Reply #44 on: June 04, 2011, 09:32:16 PM »

NORD-POIS WILL BE THE NEXT BIG QUANTUM LEAP. So let's make it a good GREAT one!


mod-mod-edit :)
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: Funding a POIS research grant
« Reply #45 on: June 04, 2011, 10:45:06 PM »


What I said, or tried to say previously, about contacting me re: anonymity -- is related to not receiving an acknowledgement (a thank you) from NORD if a donation is made through the web site.




I received an email from Stefanie about confidentiality regarding NORD's acknowledgement to me about my website donation, and I said that I only wanted acknowledgement by email, not snail mail.

(If I said NO acknowledgement that would have been respected as well).

She double-checked with me to make sure that she understood exactly what I wanted before proceeding.

VERY reassuring!
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: Funding a POIS research grant
« Reply #46 on: June 05, 2011, 01:37:29 PM »

I just made a $100 donation on the NORD website to the POIS fund!


Animus, 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

Vandemolen

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Re: Funding a POIS research grant
« Reply #47 on: June 05, 2011, 04:26:22 PM »
So if I understand it right this is the best way to send money to NORD from outside the US:
Put dollars in an envelope and send it through the post to NORD? But there is a change that the envelope doesn't reach NORD.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Daveman

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Re: Funding a POIS research grant
« Reply #48 on: June 05, 2011, 04:45:20 PM »
No way!  :D Money itself no.

You can buy a postal money order (in USD ) made out to NORD. Only NORD can cash it. Then put the money order in the mail.

Stefanie will be getting back on the details Monday or Tuesday. I imagine a cashier's cheque or straight bank transfer could work as well.

We'll have to get all the info. Like account numbers or names etc.

The first one will be the hardest. Once Stefanie has all the information, we'll make sure it's easily available and any others should be easier.

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!

Stef

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Re: Funding a POIS research grant
« Reply #49 on: June 06, 2011, 11:58:45 AM »
Hi Everyone,

Regarding International Online Donations, this option is currently being worked out on our new web site and will be set up (hopefully sooner rather than later!). As you probably know, charge cards (i.e. Master Card, American Express, etc) will automatically convert your donation into US funds--which makes it easier for everyone involved.

For now, there are two options for international donations (this is not only for the research grant funds, but is also for ALL donations to NORD, so you are not alone!):

(1) You can send an email to Cindy Thayer (cthayer@rarediseases.org) in our accounting department. Cindy is completely trustworthy, keeps everything confidential, and will treat all donations with the utmost discretion (that she always uses). She'll let you know via email when the chage goes through.

In the email to her, you'll need to write:

Name
Address
Credit Card Number, Type of Credit Card, and Date of Expiration
Amount of Donation
Disease Fund  (POIS)



(2) You can send a postal money order, as described previously, with a brief note advising of the fund you're contributing to.  Because there is a fee to do this through the post office in your town, even though a relatively small fee, it is the other option.

My suggestion is to wait until the website can support online international donations, as that will be the easiest and most direct for you.  The most anonymous route is the postal money order.

I hope this helps, and I'll let you know when the international online donation issue with the new site is resolved.

I'm sorry for this inconvenience.  If I could fix it today, I would!  However, as demografx and Daveman know, it I tried to fix this, the entire website would most likely disintegrate! 

demografx

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Re: Funding a POIS research grant
« Reply #50 on: June 06, 2011, 02:04:22 PM »




I would be happy to donate $100 to begin with once the international donation page is up.


Green, thank you!!


« Last Edit: June 06, 2011, 02:23:53 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: Funding a POIS research grant
« Reply #51 on: June 06, 2011, 03:05:31 PM »



I will try in about a few days at the post office [to send in a NORD-POIS donation]. Thanks.


Vandemolen, 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

EDS

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Re: Funding a POIS research grant
« Reply #52 on: June 06, 2011, 06:49:10 PM »
Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.

Come on everyone! Let's get this thing cranked up and beat this ghastly thing we call POIS!!

demografx

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Re: Funding a POIS research grant
« Reply #53 on: June 06, 2011, 10:36:49 PM »

Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.


EDS, 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: Funding a POIS research grant
« Reply #54 on: June 06, 2011, 10:40:37 PM »







Come on everyone! Let's get this [NORD] thing cranked up and beat this ghastly thing we call POIS!!

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



EDS, thank you for that!






« Last Edit: June 06, 2011, 11:27:04 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 #55 on: June 07, 2011, 01:56:01 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!!!




« Last Edit: June 07, 2011, 02:01:19 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 #56 on: June 07, 2011, 11:48:27 PM »




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!
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 #57 on: June 08, 2011, 09:20:26 AM »




BIG THANKS to Martin88 for completing the extraction of 325 usernames from this forum today!

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

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

Stef

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Re: NORD Research Grant
« Reply #58 on: June 08, 2011, 01:07:31 PM »
You men are AWESOME!!!!!!

demografx

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Re: NORD Research Grant
« Reply #59 on: June 08, 2011, 06:55:23 PM »
Thank you, Stefanie, the feeling is clearly mutual! :)
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