Ataxia Awareness Day Advocates Want to ‘Get a Conversation Started’

Ask Me About Ataxia campaign to mark International Awareness Day on Sept. 25

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The Friedreich’s ataxia community wants to get people talking about ataxia — a group of disorders that affect co-ordination, balance, and speech — for this year’s International Ataxia Awareness Day (IAAD), which takes place on Sept. 25.

“A great way to spread awareness is to encourage people to learn about Ataxia,” the National Ataxia Foundation (NAF) stated on its website. “The best way to help others understand something that they are unfamiliar with is to allow them to ask questions.”

The foundation, which organizes the annual event, seeks to raise awareness, accelerate the development of therapies, and improve the lives of people affected by ataxia — a group of disorders characterized by damage to part of the brain called the cerebellum, which results in symptoms like slurred speech and coordination difficulties. Friedreich’s ataxia is a specific form that is caused by a mutation in the FXN gene.

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The NAF is encouraging people affected by ataxia to post a picture of themselves or their group with a sign that says “Ask Me About Ataxia,” tagged with the hashtag #AskMeAboutAtaxia. Photos also can be submitted directly to NAF via email to [email protected], and the organization will post these photos as part of its campaigns throughout the month of September.

“Our goal is to get a conversation started,” the foundation added. “If you give your friends and followers the opportunity to ask questions — you never know how many people you might reach! Share what you know about Ataxia and your experiences.”

The awareness day “is a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease,” according to the NAF.

It’s encouraging members of the ataxia community — including patients, family members, caregivers, and other supporters — to get involved in spreading awareness and advocating for the needs of people affected by ataxia. Supporters are encouraged to share information about ataxia and/or their own experiences with the disorder using the hashtag #IAAD22. NAF will also be posting messages for the awareness day on its Twitter and Facebook pages.

NAF and the Friedreich’s Ataxia Research Alliance are also teaming up for the fourth United Against Ataxia Hill Day, held on Sept. 21. In this virtual event, advocates will talk with members of Congress about issues that are important to the ataxia community.