Advocates aiming to unite community on International Ataxia Awareness Day
'But we need your help!' says US nonprofit organizing outreach efforts
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International Ataxia Awareness Day on Sept. 25 aims to bring people together worldwide to raise awareness of ataxia — a group of diseases that includes Friedreich’s ataxia (FA) — and the National Ataxia Foundation (NAF) is urging everyone to take part through advocacy, social media, virtual and in-person events, or fundraising.
“NAF is committed to leading the way on this outreach effort — but we need your help! We encourage individuals and disease organizations to join us by planning events and/or awareness campaigns,” the Minneapolis-based nonprofit wrote on its webpage for the annual awareness day.
Ataxia causes a loss of muscle coordination, leading to difficulty in maintaining balance, walking, and moving. FA, a rare inherited disease, is caused by mutations in a gene that encodes a protein key to producing the energy cells use. Nerves and muscles are particularly vulnerable to the loss of energy that results from those mutations, and this leads to symptoms, most notably ataxia, that progressively worsen over time.
In the lead-up to International Ataxia Awareness Day, the NAF is spearheading a coordinated effort to bring individuals and organizations together to take part in activities that could raise awareness of Friedreich’s and other forms of ataxia.
Hill Day on Sept. 23 bringing concerns to US legislators – virtually
According to the NAF, this is a “great time” to start new initiatives — including efforts to speak up for this group of diseases and push for change. One major initiative is the United Against Ataxia Hill Day, organized by NAF and the Friedreich’s Ataxia Research Alliance (FARA). Each year, during this month, advocates meet with members of the U.S. Congress to discuss issues that matter to the community and to support laws that affect it.
This year’s Hill Day on Sept. 23 is virtual, so anyone living in the U.S. can participate from wherever they are. “We invite you to join NAF and FARA in raising awareness about ataxia,” the NAF wrote. “There is no cost or need to travel. Instead, you can speak to your Congressional Members right from the comforts of your home.”
Advocates can also try to raise awareness closer to home. The NAF encourages people to seek a proclamation or resolution for International Ataxia Awareness Day — an official statement recognizing the event — in their own city or state. A downloadable guide explains how to request a proclamation or resolution.
Patient advocates urged to share their personal stories
Social media is another way to share a personal story or facts about ataxia, and the NAF provides sample posts for anyone unsure what to write. The official hashtag for this year is #IAAD26, and using it can help International Ataxia Awareness Day trend online. The nonprofit also asks people to follow its Facebook and X pages to share its messages.
On its Instagram page, the organization has launched an Ask Me About Ataxia campaign, using the hashtag #AskMeAboutAtaxia. The idea is to start conversations, because, the group notes, it’s often better to learn when asking questions about something unfamiliar. People in the community can submit or post a photo of themselves or a group holding a sign with those words, then share what they know and what they have experienced.
Printable signs are available in color and in black and white. Graphics and information are also free to download, including Facebook and X images, banners in white and gold, and a brochure about ataxia. Sharing the International Ataxia Awareness Day with friends, family, and local news outlets can help spread the word further, advocates say.
Another way to take part is by attending a Walk N’ Roll to Cure Ataxia. It is the NAF’s largest grassroots fundraising campaign, meaning it depends on community members raising money locally. The event, started 2007, takes place in cities across the U.S. Those who want to plan their own event can choose almost any format, whether small or large, social or educational, or focused on sharing information or raising money.
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