The Orthostatic Tremor Forum (archive)

Hello everyone,
The latest total is $27,000.00 for our research fund. Our goal of $35,000.00 is certainly within sight - please do your part to make this happen.

Sincerely
Peggy

Hello everyone!

Thanks Peggy for the latest update on our research fund; we are getting close, but still need members to donate!

I realize how difficult times are now ~ but if everyone registered on this site at this moment, (580), could give $10.00 that would bring our total to $32,800.00; but if everyone could give just $14.00, that would bring our contribution to NORD to $35,120.00!!!! (I think my figures are correct!). We would be 'over the top' and NORD would then accept us for researching OT. We are sooooo close!

Would each of you PLEASE think about it? You could skip that speciality coffee a few days and you would have the money; or skip a dinner out ~ that would certainly do it.

We TRULY need your help NOW! Peggy has worked so hard, as has Pat getting things organized and on our way; there are many others who have helped as well. Many of you have donated, and it is so appreciated; but there are others who probably think, "I will do that tomorrow!"....well, tomorrow is HERE!

Some may be able to donate more than $10.00 or $14.00; if so, that would be wonderful. There may be those who really can't; we understand that. But of all who are registered on this wonderful site ~ we should be able to come up with the rest of the money.

We ALL need to pull together and get this done.

Thank you to all who have donated; and thank you to all who will donate.

Betty

Betty, please post again where and how to send a donation, because there are different ways. I sent mine to NORD and if I remember correctly I actually phoned them before but I do not have the #. When I talked to the lady she had never heard of our group but did send back a letter to be used for tax purposes. Thanks for all your work, we are getting close and need to have research done that will help all of us.

Hi Jolarson,

So good to see people are reading some of the postings; it is sooooo very important to all of us to try and raise the remainder of the funds needed for NORD to accept us for study.

You questioned how you can donate again; it is difficult sometimes to navigate through the different sites to find the correct one. I went to the site and have copied all the information for you. See below. Thanks for your inquiry and hopefully we will reach our goal soon.

Perhaps others will also donate whatever they can.

Betty

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"Together we can stand up to OT
Help fund research towards the cause, treatment and cure of Orthostatic Tremor

Moderator: gloria

Post a reply 11 posts • Page 1 of 1
Report this postReply with quote Together we can stand up to OT
by gloria » Tue Nov 04, 2008 9:07 am

Donate now to support research for the cause, treatment and cure of Orthostatic Tremor.

Members of the OT forum have been in contact with the National Organization of Rare Disorders (NORD)** to create a restricted nonprofit fund under the NORD umbrella that will be used for research. Our initial goal is to achieve a minimum of $35,000, after this goal has been reached, NORD will issue a Request for Proposals. The NORD Research Grant Program provides seed-money grants to academic scientists for clinical research. The hope is that these studies will ultimately lead to new diagnostics or treatments for Orthostatic Tremor.

All donations are tax deductible to the fullest extent of the law and you will receive a receipt from NORD. Every gift brings all of us closer to our goal.

3 convenient ways to donate: on the NORD website, through the mail or over the telephone.

• Donate on the NORD website, using your credit card by following these steps:

1. Visit the following website: http://www.rarediseases.org/helping/donate
2. Enter the amount of your donation
3. IMPORTANT: in the field "How did you hear about NORD" please enter "Orthostatic Tremor Fund"
4. Click on the "make donation" button and follow the instructions to checkout.

• Send your donation through the mail. Make your check payable to NORD/OT Restricted Research Fund and mail to:

NORD
PO Box 1968
Danbury, CT 06813-1968

• Donate over the phone by calling 203-744-0100 ext. 252 to contribute by phone. Please mention that the donation is for the Orthostatic Tremor restricted fund.

If your employer offers matching gifts, please send the paperwork to NORD for an additional gift to OT!

All together we can stand up to OT.

**The National Organization for Rare Disorders (NORD), a 501(c)3 organization, a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
http://www.rarediseases.org

The concept of an OT fund was first discussed at the Rochester '08 OT meeting and a special thanks to Pat and everyone involved for their work contacting NORD, gathering and assembling this information.gloria

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