So many wonderful things taking place at the National Ataxia Foundation these days that it's difficult to find the best place to start. Let's go with the obvious!
The National Ataxia Foundation has received the coveted 4-star rating for demonstrating strong financial health and commitment to accountability and transparency.
Friedreich Ataxia Patient Focused Drug Development (PFDD) Meeting
Tell the FDA what is important to you in finding a treatment for Friedreich Ataxia
An upcoming Friedreich ataxia (FRDA) Patient Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) is your opportunity to tell FDA and drug developers about challenges and burdens you have experienced with FRDA, and share your thoughts about what is most important to you in evaluating potential new treatments for the disease.
The meeting, co-organized by the National Ataxia Foundation, Friedreich's Ataxia Research Alliance, and Muscular Dystrophy Association, marks the first-time patients and families affected by FRDA will be able to speak directly to the FDA and share their experiences in their own words.
There is still time to register for the conference being held in San Antonio, TX, March 10-11. The early-bird registration ends January 29. Regular registration rates begin January 30-March 3. Registration at the door is not recommended.
The Southwestern Meet and Greet Reception will be held on Friday at 5p.m. and the conference will conclude with the Diamond Jubilee Banquet on Saturday at 7p.m.
The AAC is being held at the Grand Hyatt in San Antonio. 1-888-421-1442 or (210) 224-1234
The CoRDS/Ataxia Patient Registry, is an important tool to inform those with Ataxia of research studies for which they may qualify. We need everyone who is affected with any form of Ataxia or who is at risk to develop Ataxia to enroll. This is essential as Ataxia research moves into the clinical phase. Enrollment can be done on-line by
clicking on this link or by mail. If you want to enroll by mail or have any questions about CoRDS, please contact CoRDS personnel at cords@sanfordhealth.org or 1 (877) 658-9192
