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My name is Denny and I am 71 years old living in a small town in Northern Minnesota. I have had a diagnosis of Ataxia (unknown origin), for twelve years. An avid outdoor sportsman, I love hunting, fishing and was a passionate long-distance runner. As the past twelve years have Read More…
Written by Taylor Stolberg Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: NAF Graduate Research Fellowship (2023): “Identifying Read More…
One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when I drank wine, but also when I was tired mentally or physically. After the Basel University Hospital in Switzerland tested me negative for all the Read More…
Written by Celeste Suart, PhD The end of October 2025 was a busy time for the research team here at NAF. We had delegates at two different research conferences: the Clinical Trials in Inherited Ataxias (CTAX) conference and the Amsterdam International Ataxia Patient Conference. Here are a few highlights from Read More…
Written by Taylor Stolberg Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Early Career Investigator Award (2024): “Decoding Read More…
“His Light Endures”: Honoring Dušan Through Art and Advocacy By Dr. Nanette Presswell My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full of imagination. He had a passion for life and a restless mind that never stopped asking questions, especially about the rare illness he lived with: Read More…
Written by Taylor Stolberg Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Research Seed Money Grant (2025): “Uncovering Read More…
My Ataxia Journey: Sailing Uncharted Waters My name is Marius, and I live in Romania. I’m 64 years old, and I’ve always been an active, independent person who enjoyed thinking clearly and moving freely. For over 40 years, I worked as a shipping electrical engineer—until I retired in May 2024. Read More…
Written by: Sophia Salemi, BS Edited by: Celeste Suart, PhD Article highlight: Scientists have discovered that changes in the POU4F1 gene can cause a very rare hereditary ataxia syndrome with first symptoms beginning in childhood. A new patient registry is now open, giving families the opportunity to join a growing community Read More…
Biohaven announced that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) for the New Drug Application (NDA) seeking approval of VYGLXIA (troriluzole) for the treatment of spinocerebellar ataxia (SCA). A CRL means the FDA has completed its review and determined that the Read More…
