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The Poker Walk

Author: Joel Sutherland, Development Director Many people believe there is NOTHING they do to raise funds and teach more people about Ataxia.  Wrong! Not only are they wrong, but they can be missing out on having fun as well.  Earlier this year, I invited five people to invite five others Read More…

What is the Ataxia Patient Registry?

Author: Sue Hagen, Patient and Research Services Director A Community Mobilized Toward Treatments One of the goals of a disease-specific patient organization is to provide resources that will help in the discovery of treatments for their disease. And that is absolutely true of the National Ataxia Foundation. We want treatments Read More…

Greater Atlanta Support Group Summer Update

Author: Greg Rooks, NAF Support Group Leader The Greater Atlanta Ataxia Support Group held its annual picnic at Lake Lanier on June 15th. We had a wonderful gathering of approximately 30 individuals. The weather could not have had better. The support group provided grilled hot dogs and hamburgers. Members brought Read More…

Preparing for the Annual Ataxia Conference in Denver

Author: Andrew Rosen, Executive Director A Note from Andrew Hi Everyone: August in Minnesota. It is hot and humid, and thoughts have turned to my three teenagers getting ready to go back to school. I love the pace of summer – everything slows down a bit, the days are long, Read More…

STL Ataxia Group

St. Louis Ataxia Support Group Meeting

Author: Shannon Dunphy Lazo, NAF Support Group Leader Our June 8th meeting was held at the Center for Advanced Medicine. Melinda McAliney, our guest speaker, started us off. She introduced herself and explained her goals. Melinda is from Vario Philanthropy, and she wants to explore our support group and provide Read More…

Treasure Coast Ataxia Support Group

Summer 2019 Support Group News

Photo: Treasure Coast Ataxia Support Group Author: NAF Support Group Leaders Treasure Coast Ataxia Support Group Meeting On June 29, at the Chop House we had a great lunch and get together. Our guest speaker, Mark Bozzo, a massage therapist, talked about massage therapy and how it’s maintenance helps with Read More…

SCA Global

NAF Participates in Global Initiative for Ataxia Research

SCA Global Launches Website The inaugural meeting of the SCA Global initiative was held at NAF’s Annual Ataxia Conference in April of 2018. Researchers from around the world created a global collaboration in clinical research efforts for Spinocerebellar Ataxias (SCA). SCA Global was created to address the obstacles that clinical Read More…

NIH Awards $1 Million to Ataxia Research

Thanks NAF Donors for Helping Make It Possible In 2015, Miao Zhang, Ph.D. was early in his career on the Ataxia research scene, but he had a strong desire to look for answers. He applied for a Young Investigator Grant from the National Ataxia Foundation to help get his project Read More…

Cure Ataxia Research Drive

2017 Research Drive Kicks Off

Join the 2017 Research Drive to Help #CureAtaxia The Annual Ataxia Research Drive began on October 15 with the challenge to raise $400,000 by December 15 to fund the finest Ataxia research. There were 84 research applications submitted to the National Ataxia Foundation for consideration. They are currently being peer-reviewed Read More…

Clinical Trial News

Ataxia Clinical Trial Progresses to 48-Week Extension Phase

BIOHAVEN OPTIMISTIC FOR NEXT PHASE OF TRIAL DESPITE DISAPPOINTING TOPLINE DATA As NAF previously reported, BioHaven Pharmaceutical Holding Company Ltd. recently completed its 8-week trial of dosing for its drug compound trigriluzole. This is the largest clinical trial for Spinocerebellar Ataxia (SCA) to-date. During the 8-week randomization phase, either the compound Read More…

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