Advocates to shine light on ataxias this international awareness day
FARA cites 'sense of urgency families feel to realize treatments' for FA
International Ataxia Awareness Day is coming up this Thursday, and organizations around the world are getting ready for this annual daylong opportunity to shine a light on what it’s really like to live with Friedreich’s ataxia (FA) and other ataxia types.
“September 25, International Ataxia Awareness Day, is an opportunity to bring attention to the experience of living with different ataxias, the need to support research, and the sense of urgency families feel to realize treatments and cures,” Felicia DeRosa, vice president of fundraising and communications at the Friedreich’s Ataxia Research Alliance (FARA), said in a statement to Friedreich’s Ataxia News.
FARA will be among the many advocacy organizations encouraging people with ataxias to get more involved with patient and research communities this awareness day.
“By using your voice to advocate for the FA community, you are advancing FARA’s mission to expedite treatments for FA,” FARA’s advocacy webpage states.
Ataxia refers broadly to a loss of coordination, which can lead to symptoms such as difficulty walking, problems with speech, and abnormal eye movements. There are several different forms of ataxia; Friedreich’s ataxia is a specific type caused by mutations in the gene FXN.
International Ataxia Awareness Day, or IAAD, is marked on Sept. 25 each year as “a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease,” according to the awareness day webpage of the National Ataxia Foundation (NAF).
For this year’s awareness day, the NAF is encouraging community members to post their stories on social media using the hashtag #IAAD.
Advocates took to Capitol Hill ahead of International Ataxia Awareness Day
The NAF is also running a campaign called #AskMeAboutAtaxia, encouraging people living with ataxias to start conversations to educate other people about their condition. The NAF has created a number of resources, including sample social media posts and signs, to help community members make themselves heard online.
The foundation is also organizing Walk N’ Roll events — its biggest community fundraiser — with dates set for September, October, and November of this year and March of next year in various cities across the country. Each year, thousands of families, friends, coworkers, and neighbors join together with patients to support NAF’s mission to speed treatment development and improve the lives of people with ataxia.
The NAF also is encouraging community members to look for foundation events near them — or to plan their own.
FARA and NAF last week together led an event called Hill Day 2025 in Washington, D.C. On Capitol Hill, advocates met with U.S. legislators to discuss the needs of people with ataxias, and to voice support for federal funding of biomedical research.
We honor the families who [get involved] on a daily basis in their local communities as they manage their personal medical care as well as at the state and federal level where they advocate for funding and policies that support research advancement.
The patients, family members, and supporters also pushed for a few specific pieces of legislation that are expected to benefit the ataxia community.
DeRosa noted that involvement matters — at any level — for advancing treatment and care for people with FA and other ataxias.
“We honor the families who do this on a daily basis in their local communities as they manage their personal medical care as well as at the state and federal level where they advocate for funding and policies that support research advancement,” DeRosa said.
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