National Ataxia Foundation

Do you enjoy NAF's free webinars? They are just one example of the programs we can offer because of support from people like you. Consider giving monthly to provide consistent resources for education, advocacy, and support services that families affected by Ataxia rely on. Donate before April 30th to have your donation matched: www.ataxia.org/DoubleUp

#2025AAC is here! This weekend's hosts Joel Sutherland and Dana Mauro kicked things off this morning with their Daily Welcome. Seeing this dream team reunite every year is always a great time. Joel is auctioning off his golden tie once again as a symbol of hope and Dana wants attendees to remember to 1. Stay Hydrated and 2. Network, Network, Network! What has your highlight of the day been so far?

We're so excited to hear from Jacob this weekend! #2025AAC

We are pleased to announce that Lexeo Therapeutics is attending and sponsoring the 2025 National Ataxia Foundation Conference in Las Vegas, NV. Over the next few days, our team is excited to engage with the ataxia community and contribute to the ongoing discussions about advancements in care and research. Click here to learn more about LX2006, Lexeo’s investigational gene therapy for the treatment of Friedreich ataxia cardiomyopathy: https://lnkd.in/exYWF9U7

2X Impact for 1 Month Only! Thanks to a generous pledge from a small group of our dedicated supporters, every dollar you donate through April 30th will be doubled—up to $50,000! Donate at www.ataxia.org/DoubleUp. The Accelerate fund supports NAF's non-research programs, which are crucial to providing education, advocacy, and support services for families affected by Ataxia. These initiatives are only possible with your help, and now, your impact can go even further.

We're grateful for the opportunity to put Ataxia at the forefront of the conversation in front of so many industry experts. #AtaxiaAwareness

Bill Nye takes the #STATBreakthrough East stage for a rare, personal conversation about ataxia — a neurological disease that has impacted his family for generations. Don’t miss this powerful discussion. Get your tickets: https://lnkd.in/gN4y3nGJ National Ataxia Foundation, Anil Oza

Next week! NAF's CEO, Andrew Rosen, will be speaking with Bill Nye about the importance of research and development for rare disease at the STAT 2025 Breakthrough Summit East! We're grateful for the opportunity to put Ataxia at the forefront of the conversation in front of so many industry experts. Learn more about the event at https://lnkd.in/g9xXZP7K

The Senate may vote today on a proposed a budget that would cut FY25 funding for the Congressionally Directed Medical Research Program (CDMRP) by 57%. Contact your representatives today to urge them to vote no. Learn more: https://lnkd.in/gwDG_Yy4

Meet Dr. Nick Kozauer, a new member of NAF's Board of Directors! Dr. Kozauer is a physician with fellowship training in neuropsychiatry. He spent more than 13 years of his career at the FDA in various leadership roles in the neurology division. He also has leadership experience in the pharmaceutical industry. He is currently the VP of Regulatory Strategy for a company that advises pharmaceutical companies that are developing treatments for neurological conditions like ataxias. During his career, he has had the opportunity to know and work alongside many people living with ataxias and their families, physicians caring for ataxia patients, and advocates, including many members of NAF. Nick said, "I have constantly been amazed by their determination to do everything possible to improve the lives of people living with ataxias and to make progress on multiple fronts in the fight against these diseases. I am humbled to now have the opportunity to help NAF in its mission as a member of the NAF Board of Directors." Please join us in providing a warm welcome to Dr. Kozauer!