Through the dedicated work of members of the OT forum/community, a nonprofit fund for the purpose of research into Orthostatic Tremor has been established through the National Organization of Rare Disorders (NORD)**. 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. All donations go directly to NORD, all decisions about the recipients of the grants are under the control of their "Research Grant Policy":
NORD's grant review process is based on the same peer review system utilized by the National Institutes of Health (NIH). Scoring of grants is done individually by each medical expert, and scores are added together to determine the final ranking of each proposal. Any reviewer with a conflict of interest is excused from voting on a specific proposal. It is not possible for donors to signify how they want their donations spent (e.g., on a genetic test rather than development of a treatment), or which researcher should be funded. The grant selection process is unbiased and independent; awards are based solely on scientific merit. Only the best research projects will be funded.link for more information.
The Orthostatic Tremor website and the work provided by members to establish meetings etc, are donated and not part of these research funds. As a result your donations go directly to the NORD OT Research Fund.
3 CONVENIENT WAYS TO DONATE *
1. For US and non-US donations - DONATE ON THE NORD WEBSITE, using your credit card by following these steps:
1. Visit the following website: LINK to NORD
2. Enter the amount of your donation
3. VERY IMPORTANT - click on the "RESEARCH FUND" button and choose "PRIMARY ORTHOSTATIC TREMOR" from the drop-down menu.
2. For US and non-US donations - DONATE BY PHONE
To make a credit card donation over the phone, please call 203-744-0100.
- Please mention that the donation is for the Primary Orthostatic Tremor Fund.
3. SEND YOUR DONATION BY MAIL. (US citizens only) Make your check payable to NORD/PRIMARY ORTHOSTATIC TREMOR Restricted Research Fund and mail to the following address. If you are sending a donation via mail from outside of the US please confirm with NORD that they can accept your check/checque, in some chases it would be best to use the link above and donate online.
ATTN: Cecilia Hall
NORD 55 Kenosia Avenue
Danbury, CT 06810
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.
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.