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This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF. Hello from NAF’s Clinical Services Team Hello Fellow HCP’s, When I think of February, the first thing 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…
Drug companies must follow a detailed process to build and submit their New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA). You can read more about NDAs in an earlier PrepRARE article here. But did you know that the FDA has its own set of rules to Read More…
Minneapolis, MN (September 25, 2025) – The National Ataxia Foundation (NAF) today announced the launch of The Science Guy: Back in the Lab for FA, a new educational campaign to raise awareness and understanding of Friedreich ataxia (FA), a rare, genetic disease. The campaign, in partnership with leading biotechnology company, Read More…
Guest Author: Beverly Nelson Becoming a caregiver for someone with ataxia changes the rhythm of your days almost overnight. The mix of medical responsibilities, emotional support, and constant problem-solving can be both meaningful and exhausting. Without a plan for your own well-being, the role can quietly erode your health and Read More…
Grief is universal—painful, sticky, and nonlinear. For those navigating chronic illnesses like Ataxia, grief often resurfaces repeatedly, in waves, each time a new change or loss occurs. This article offers tools, stories, and models for understanding and healing through chronic illness-related grief. Understanding Grief in Chronic Illness What Is Grief? Read More…
Disability Services and Financial Planning Information and resources on disability services and financial planning for people impacted by Ataxia. What is Disability? What are Disability Services? Disability is broadly defined as any condition that makes it more difficult for a person to do certain activities or interact with the world Read More…
Submitted by Theresa Nelson, Executive Director at Ataxia Connection It is an exciting opportunity for our organization, Ataxia Connection, to travel and attend the Annual Ataxia Conference (AAC) as a group and network with other individuals and care partners in the Ataxia community across the U.S., along with meeting the Read More…
Submitted by Mark Holdenried Attending the 2025 Annual Ataxia Conference (AAC) in Las Vegas was a meaningful and energizing experience. From the travel experience to sessions, each moment added to the feeling that we truly are not alone in this journey. Meaningful Moments and New Connections Before even boarding the Read More…
In clinical research, scientists design studies to learn more about diseases and answer questions about new treatment options. Interventional clinical trials are used to better understand the safety and effectiveness of a new drug or medical device. Observational clinical trials help researchers learn more about how diseases develop over time Read More…
