Ask the Ataxia Expert

General
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Back by popular demand! NAF is introducing a monthly “Ask the Ataxia Expert” series. First introduced at the 2021 Annual Ataxia Conference, it was an open forum for any questions. It provided a great experience and opportunity to learn from a renowned Ataxia clinician.

Each month, NAF will invite an expert to answer your questions about Ataxia. Our goal is to empower you with the knowledge you need to live better with Ataxia. This will be an informal discussion-style webinar without a set topic. Come with any questions you have related to Ataxia. Don’t have a question? Join us to listen in.

Ask the Ataxia Expert

with Dr. Susan Perlman

Wednesday, May 12, 2021

11:30 AM - 12:30 PM CDT

Link to Join: https://us02web.zoom.us/j/87981045554

Meeting ID: 879 8104 5554

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About the Expert

Susan Perlman, MD is a graduate of Cornell University and the State University of New York at Stony Brook School of Medicine. She did an internship in medicine, her residency in neurology, and a two-year fellowship in Friedreich’s Ataxia at UCLA Medical Center. Dr. Perlman is currently a Clinical Professor of Neurology and Director of the Ataxia Center at the UCLA Medical Center in Los Angeles, CA. She has been head of the Ataxia Center at UCLA since 1983. She has worked in Ataxia diagnosis for over 30 years and has networked with other “Ataxologists” across the country and around the world, trying to build better collaboration in the development to treatments and ultimately cures. She helped develop the National Ataxia Database for clinical research. She is participating in 2 natural history studies (for dominant Ataxia and Friedreich’s Ataxia) and has participated in 7 clinical drug trials. Dr. Perlman would like to expand the work being done in non-genetic Ataxia as well. Dr. Perlman authored Evaluation and Management of Ataxic Disorders: An Overview for Physicians which has become a valuable resource for NAF. She serves on NAF’s Medical Research Advisory Board, NAF’s Board of Directors and is NAF’s Medical Director.

Tips for Attending

This will be a Zoom meeting. Feel free to share your video if you are comfortable doing so, but this is not required. If you join without sharing your video, you will still be able to see everyone and participate using audio or chat. Background noise can be distracting in large meetings. Help us limit interruptions with the tips below:

  • Keep yourself muted unless you are asking a question.

  • Use the “Chat” feature to submit questions in writing.

  • Raise your hand if you would prefer to ask your question with video or audio. A facilitator will call on you when it is your turn.

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This will be my first “Ask the expert” session. Looking forward to being a part of it. Thank you for the information Beryl Park!
MB

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So tired of being shuffled from one clinician to the next; My funds are not unlimited. Why is it so freaking hard to find a professional here in the Houston area that has a clue about this disease. Can I at least get disability status, (frustrated.)

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:thinking: Have you had no luck with the recommendations on NAF (National Ataxia Foundation) there are a few in your area.
See www.ataxia.org/Neurologists-

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If you have a documented SCA, you are on the compassionate allowances list for social security disability (if this is what you were referring to). You are automatically approved for disability. They do not check the list for you, so you have to point this out to them either right off the bat or during an appeal.

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