Request for Proposals for Tarlov Cyst Research!
Saturday, March 8th, 2008
The Tarlov Cyst Disease Foundation has provided a grant for restricted Tarlov cyst research. The term “restricted,” means that the grant is exclusively for researching Tarlov cysts. The Tarlov Cyst Disease Foundation is working with the National Organization for Rare Disorders (NORD) to determine the researcher, provide the grant and oversee the research process.
The process to determine the researcher/grantee began in March 2008 with NORD’s international request for proposals (RFP) and their existing database of researchers. The RFPs will be placed in medical and scientific journals and newsletters throughout the world. Individual mailings will be sent to academic researchers. Applicants may submit research proposals to NORD, no later than May 9 and apply for the grant the Foundation has provided. To read more about the research grant, visit the NORD website at : www.rarediseases.org/research/fp08/Tarlov_Cysts_2008_RFP.pdf .The NORD Medical Advisory Committee and the NORD Board of Directors will determine the final applicant, and the “grantee”/researcher will be announced on or around November 7, 2008. The grant is for a period of one year, and the researcher will submit the research results for publication to the scientific and medical community. The results of the research could be used to obtain further funding from NIH (National Institutes of Health) or other funding agencies.
Providing this restricted Tarlov cyst research grant was a long-term dream that the Tarlov Cyst Disease Foundation members and donors helped to make possible. This is a significant initial step in the process to have a researcher focus on Tarlov cysts. The Foundation will continue seeking grants and more funding for research and education in the future; this is just the beginning!
If you wish to be part of the efforts provided by the Foundation, on behalf of all those around the world who live with the pain of symptomatic Tarlov cysts, contact the Foundation by writing to contactus@tarlovcystfoundation.org .You may also become a Foundation member or donor by visiting the “Join Us” page on this website.
We invite all Tarlov cyst patients to participate in the Patient Survey on the “Research & Survey” page of this website. These surveys will be provided to the grantee/researcher selected, so you will be part of the groundbreaking research that will provide solutions for the future!
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Tarlov Cyst Disease Foundation Submits Congressional Grant Proposal Requesting Funding for Tarlov Cyst Research and Education
For the past two years, the Tarlov Cyst Disease Foundation has been working with the Honorable Congressman John J. Duncan, Jr.’s Tennessee and Washington offices to submit proposals to congress for appropriation of funding for Tarlov cyst research and education. The proposals were submitted in March 2007 and March 2008.
The Foundation had the assistance of the National Organization for Rare Disorders (NORD), the National Institutes of Health (NIH), The University of Tennessee Brain & Spine Institute and other individuals to create and support the proposal and the Foundation. The Labor, Health and Human Services, and Education Sub-Committee received, reviewed, and approved the initial proposal at the end of summer 2007. It was sent to the Appropriations Committee for their final approval, and if approved, for inclusion in the 2008 Congressional budget, after passing the full vote of Congress. The results of the 2009 Fiscal year proposal will not be announced until late 2009.
The Labor, Health and Human Services, and Education Sub-Committee membership represents 13 states with 17 members. Constituents, who have Tarlov cysts and who live in those states, contacted the committee members with the assistance of the Foundation. These Tarlov cyst patients are a part of the Foundation’s Congressional Proposal committee, working closely with the Foundation’s Board of Directors, to share important information about the proposal and Tarlov cyst disease, and to request their Congressional representatives’ support of the proposal.