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Our Mission

The National Ataxia Foundation is dedicated to improving the lives of persons affected by Ataxia through support, education, and research.

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Mike De Rosa, a military veteran, explains why he now fights for his Ataxia brothers and sisters with the Joint Mission Bataan. He will complete the Bataan Memorial Death March, a 26.2 mile hike through the desert of New Mexico. You can help Mike by contributing to the Joint Mission Bataan, telling everyone you know about his journey, and sharing his video. We're hopeful that the more people that know about Mike's hard work, the more people will support his goal. With more awareness and contributions comes increased understanding and investment in a cure.

Support the Joint Mission Bataan: app.mobilecause.com/form/8CRuEQ?vid=gnnr
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Sanford CoRDS will be exhibiting at the 2019 Annual Ataxia Conference! You'll be able to stop by to have your Ataxia patient registry questions answered and register onsite. More info about 2019 AAC: ataxia.org/2019-annual-ataxia-conference/ ...

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The 2019 Annual Ataxia Conference will feature a new Ataxia Marketplace. Visit the Marketplace for onsite research opportunities, various Ataxia product and services exhibits, and pharmaceutical company representatives. Motion Therapeutics is one of our scheduled exhibitors at AAC. They will be there with their BalanceWear Stabilizing Garment for attendees to check out. We look forward to seeing you all in Vegas next month!
More info and register: ataxia.org/2019-annual-ataxia-conference/
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Events

Feb 22, 2019 12:00 am - 11:59 pm
Abilities Expo – Los Angeles

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…

Feb 28, 2019 12:00 am - 11:59 pm
Rare Disease Day

Rare diseases are not so rare:  there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. Read More…

Mar 01, 2019 11:00 am - 02:30 pm
U of MN Rare Disease Day 2019!

The University of Minnesota College of Pharmacy presents Rare Disease Day Event 2019!  This year the program will further the understanding of gene therapy with an overview of current therapies and therapies that are in the pipeline. For more information about Rare Disease Day Read More…

Mar 03, 2019 11:30 am - 03:00 pm
Arts for Ataxia

Calling all people with Ataxia and JHU students to display their artwork for the event! Featured keynore speaker: Dr. Serap Bastepe-Gray — A physician and virtuoso guitarist, who is the Director for Peabody Occupational Health and Injury Intervention program. She holds joint appointment at the Johns Hopkins Department of Neurology and the Peabody Conservatory. For Read More…

Member Stories

DeCrescenzo Family
DeCrescenzo Family

“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…

Lisa Cole and daughter
Lisa Cole

“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…

Ed Schwartz
Ed Schwartz

“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…

Jonathan Zilles
Jonathan Zilles

“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…

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