Centennial Elementary Walk-A-Thon
For Friedreich's Ataxia a Success!
(Free-driks A-tax-ee-a)
Tuesday April 29, 2003 Loveland, Colorado
Thank you for helping us raise $4,821.40 for Friedreich's ataxia research!
*Read below to see how your research dollars are funding grants.
Pictured: Allie Kittel and her big brother Aaron both have Friedreich's ataxia.
Please consider making an annual donation to our cause. Donations can be mailed anytime of the year to:
Friedreich's Ataxia Research Alliance (FARA)
2001 Jefferson Davis Highway
Suite 209, Arlington, Virginia USA 22202
Web Site: www.frda.org
*Research Update
This past February (2003), 100 scientists came together in Washington D.C. from around the world to share their knowledge and expertise on the subject of Friedreich's Ataxia; it cause, how it might be arrested and cured. The research scientists have successfully created mice with Friedreich’s ataxia, and are working with and testing new antioxidants to slow the progression of nerve death. They are looking at gene therapy and repair, and methods to prevent the iron overload in the mitochondria that causes the disease. A clinical trial is currently underway in Washington D.C. testing the effectiveness of a new drug, Idebenone, to treat and hopefully stop the progression of FA. Allie spent her spring break this year, in the hospital at National Institutes of Health, as a subject in that drug study. She has the desire to “do something” to help all the people with Friedreich’s ataxia and is hopeful they will find a cure soon.
5/15/2003: This month the FARA scientific advisory committee recommended the funding of 3 additional research grants. FARA and Seek a Miracle/MDA are "teaming up" to stretch our fundraising dollars. The grants represent 50/50 funding. The grand total of research grants funded over the past four years is about three-quarters of a million dollars!
This past February (2003), 100 scientists came together in Washington D.C. from around the world to share their knowledge and expertise on the subject of Friedreich's Ataxia; it cause, how it might be arrested and cured. The research scientists have successfully created mice with Friedreich’s ataxia, and are working with and testing new antioxidants to slow the progression of nerve death. They are looking at gene therapy and repair, and methods to prevent the iron overload in the mitochondria that causes the disease. A clinical trial is currently underway in Washington D.C. testing the effectiveness of a new drug, Idebenone, to treat and hopefully stop the progression of FA. Allie spent her spring break this year, in the hospital at National Institutes of Health, as a subject in that drug study. She has the desire to “do something” to help all the people with Friedreich’s ataxia and is hopeful they will find a cure soon.
5/15/2003: This month the FARA scientific advisory committee recommended the funding of 3 additional research grants. FARA and Seek a Miracle/MDA are "teaming up" to stretch our fundraising dollars. The grants represent 50/50 funding. The grand total of research grants funded over the past four years is about three-quarters of a million dollars!
Just this week, a new group of researchers contacted FARA in search of funding for yet another NEW avenue of FRDA research. We look forward to receiving their grant application and are hopeful the scientific advisors will agree it's "sound science" and meritorious of funding.
Working together we *ARE* making a difference! Here is the information on the most recent grants:
1. Dr. Robert Wells - Texas A&M Medical Center -- "DNA Triplexes in
the Etiology of Friedreich's Ataxia" Total of $38,332.
2. Drs. Jane Fleming/Ian Alexander - Children's Hospital at Westmead,
Australia - "Towards Gene Therapy for the Peripheral Nervous System
Manifestations of Friedreich's Ataxia"
Total of $35,000
Total of $35,000
3. Dr. Dave Lynch - Children's Hospital of Philadelphia (CHOP) -
"Clinical Measures in Friedreich's Ataxia" - further develop the
best possible set of clinical measures to use in FRDA clinical trials.
Total of $38,115.
Total of $38,115.
Friedreich's Ataxia Research Alliance