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NAF Seeks Support of a Resolution for National Ataxia Awareness Day

Author: Lori Shogren, Community Program and Services Director NAF partnered with FARA and the EveryLife Foundation for Rare Diseases to bring International Ataxia Awareness Day to Capitol Hill. United Against Ataxia Hill Day happened on September 25, 2019. We are so grateful for all the support in planning the day and will cherish the relationships that were built Read More…

Fall 2019 Support Group News

Author: NAF Support Group Leaders St. Louis Ataxia Support Group Recognized on CBS News for IAAD The St Louis Ataxia Support Group and CBS Channel 4 celebrated International Ataxia Awareness Day for the entire month of September 2019! Our group and logo were profiled each weekday night on a segment Read More…

A Week in the Life of NAF’s Executive Director

Photo: Andrew Rosen (right) presents a Certificate of Appreciation at the Orange County Walk N’ Roll to Cure Ataxia Author: Andrew Rosen, Executive Director The life of an Executive Director at a nonprofit like NAF is filled with many different tasks. While I enjoy coming to the office and working Read More…

United Against Ataxia

Author: Lori Shogren, Community Program and Services Director  An IAAD Like No Other September 25th is International Ataxia awareness Day (IAAD). Over the last 20 years IAAD has grown from a day to create awareness about Ataxia into a movement to fight Ataxia through awareness, advocacy, and fundraising. Today, thousands participate in IAAD through social Read More…

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…

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…

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…

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