Friedreich’s Ataxia Awareness Month to focus on education, community
Nonprofit research alliance dedicated to finding treatments will lead efforts
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May is Friedreich’s Ataxia Awareness Month, and patients, families, and caregivers are coming together to support one another and encourage local communities to help meet the ongoing need for funding to cure this disease.
Friedreich’s Ataxia Day is May 16.
Leading the efforts is the Friedreich’s Ataxia Research Alliance (FARA), a nonprofit helping to find treatments and a cure for Friedreich’s ataxia (FA).
“FA Awareness Month is about community, action, and impact,” Felicia DeRosa, FARA’s vice president of fundraising and communications, shared with Friedreich’s Ataxia News by email. “Throughout the month, we unite through educational programming, in‑person grassroots gatherings, creative social media awareness efforts, and by highlighting the ongoing need for research funding. It truly takes a #CommunityToCureFA, and we invite everyone to be part of the movement.”
Supporters are encouraged to take part in FARA’s #CommunityToCureFA social campaign by sharing creative #cureFA photos on social media. Crayons, coins, fruit, or even Legos can all be used.
Submitting a photo to FARA by May 12 ensures it will be shared on FARA’s social media on FA Awareness Day and gives you a chance to win FARA swag.
Participants can also purchase merchandise from the FARA online store, including T-shirts, sweatshirts, hats, and onesies.
Flash talks, bike rides, and more
The FARA Flash Talks webinar series returns this year with two sessions (May 7 and 21). Each session will feature recipients of FARA Graduate Research Fellowships and FARA Fellows, and will be moderated by members of the FA community. The talks will provide updates about the latest research in FA and are suitable for a general audience.
On May 7, Session #1 will include research talks on understanding and treating nerve damage in FA, a zebrafish model of the disease, and cellular-level analysis of FA hearts.
On May 21, Session #2 will feature talks on heart scarring in a mouse model of FA heart disease, how the disease affects the heart and how that can be addressed, and investigations into disease-related processes underlying sensory and motor function issues.
In addition, several FARA awareness events are happening in May, including:
- a spring flower sale, on May 6, in Columbus, Ohio
- a Seaside Stride, on May 9, in Seaside Park, New Jersey
- the 12th Annual Tampa Bay Kids Triathlon, on May 9, in Tampa, Florida
- a City Barbeque fundraiser, on May 23, in Newark, Ohio
The annual signature FARA rideATAXIA events in California will aim to empower individuals with FA, their families, and supporters to push past limitations and raise crucial funds for research. They will be held on May 2 in Avila Beach, May 9 in Chico, and May 11 in Danville.
“rideATAXIA isn’t just a cycling event; it’s a powerful movement. Born from one man’s determination to defy his diagnosis, this [nationwide] program has grown into a vibrant community united by a common goal of finding treatments and cures for Friedreich’s ataxia,” the event’s webpage states.
For those interested in holding their own fundraisers, FARA’s fundraising team is available to help.
FA community members are also encouraged to join Team FARA, a global group that raises awareness of the disease and supports fundraising. Finally, for those interested in donating, FARA offers several ways to give.
