The National Ataxia Foundation is dedicated to improving the lives of persons affected by Ataxia through support, education, and research.
This is important for genetic conditions, such as Ataxia. 🙌We’re excited to announce that the “Access to Genetic Counselor Services Act of 2019” (H.R. 3235) was introduced in the U.S. House of Representatives. The bill would authorize The Centers for Medicare and Medicaid Services to recognize certified genetic counselors as healthcare providers, improving Medicare beneficiaries’ accessibility to genetic counselors. bit.ly/2IeO8HI
The Clementz Family Fund will DOUBLE all donations made to NAF, up to $100,000 - but we only have ONE MONTH LEFT to get the match! We've raised just over $17k so far. Donate on Facebook with the donate button or online at: www.ataxia.org/DonateSummerMatch
Help us reach the goal by donating and/or sharing this post. Can we get to 50 shares?
A new clinical trial for Spinocerebellar Ataxia (SCA) is currently screening applicants in more than 18 medical centers across the U.S. To find out if they will be conducting trials in your area, visit the clinical trials website: bit.ly/2RQaa9i
Orphan drug status for another potential treatment for Ataxia! This is an important step towards a clinical trial for a rare disease. We'll keep you updated along the way. 😃👍
Cadent Therapeutics Announces FDA Orphan Drug Designation for CAD-1883 for Spinocerebellar Ataxia
Cadent Therapeutics Announces FDA Orphan Drug Designation for CAD-1883 for Spinocerebellar Ataxia CAMBRIDGE, Mass. May 29, 2019--(BUSINESS WIRE)--Cadent Therapeutics, a company focused on the development of therapies to improve the lives of patients with movement and cognitive disorders, today annou...For nearly 40 years, Abilities Expo has been the go-to source for the Community of people with disabilities, their families, seniors, veterans and healthcare professionals. Every event opens your eyes to new technologies, new possibilities, new solutions and new opportunities to change your life. Read More…
Join NORD this June in Houston, TX for a very special gathering! The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding – plus fun! Rare Read More…
For more information contact Susan Masse: Phone #: 860-528-1875 or E-mail: Smasse1875@gmail.com Read More…
We welcome all Ataxians and friends or family members to attend! For more information contact Cindy at: Cindyocataxia@gmail.com or 714-329-4437 Read More…
“We had time to process the diagnosis and vowed not to let it change who we are or alter our daily lives. We found a neurologist who specializes in movement disorders and Ataxia. We also joined two support groups, one at Johns Hopkins Medical Center, and the other with the Chesapeake Chapter NAF.” Read More…
“I want to help the NAF and spread awareness about Ataxia. One way I could help support NAF and also bring about awareness was by having fundraisers. I have approximately 2 fundraisers per year. Introducing the NAF to my friends and acquaintances or by telling them to go directly to the website www.ataxia.org.” Read More…
“Ataxia is the biggest challenge I have ever had to face in my life. About twenty three years ago I began to fall down in the dark. Then after experiencing symptom s of 6 other disorders over the next 20 years, and a seizure – like reaction to the composite collection of drugs I was taking, I wrecked my truck!” Read More…
“I’m Jonathan Zilles. I was diagnosed with Friedreich’s Ataxia when I was 11 years old. Life as a kid with
Friedreich’s was pretty normal, but I fell down a lot. My symptoms started early and included hand-eye coordination issues….” Read More…
Community support is vital to the work that NAF does. Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest ataxia news with our e-newsletter and Generations publication.
