Message from Executive Director Joel Sutherland
Hi everyone,

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!

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Charity Navigator

The National Ataxia Foundation has received the coveted 4-star rating for demonstrating strong financial health and commitment to accountability and transparency.

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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.
 
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A research study is currently being conducted to evaluate an investigational medication for Spinocerebellar Ataxia

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MOXle Study
A study of omaveloxolone
(RTS 408) in Friedreich's Ataxia 
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60th Annual Ataxia Conference (AAC), March 10-11
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
Registration Link
Support Group Meetings

Hopefully attending a support group meeting will leave you with a sense of hope and inspiration knowing that if others can cope, so can you. 

Come. Learn. Share. But most of all, know that you are NOT alone!

                                                       
Upcoming Support Group Meetings
Upcoming Events

Tuesday, February 28
Rare Disease Day
Let's join our efforts to give hope to rare disease patients all over the world!  Get Involved

Rare Disease Day at the University of Minnesota
University of Minnesota McNamara Alumni Center 

Friday, March 10
60th NAF Annual Ataxia Conference
San Antonio, Texas

Friday, Saturday & Sunday, March 24-26
The Los Angeles Convention Center, West Hall A

Friday, April 21
Brain Health Fair
Boston Convention and Exhibition Center, Boston, MA

 
Download the NAF App

National Ataxia Foundation Websiter
Connect and engage with the Ataxia Community through the new National Ataxia Foundation App!


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CoRDS/Ataxia Patient Registry
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
CoRDS Registration Form
NAF Mailbox
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