Friedreich’s Ataxia Awareness Month begins with conversations

FARA will lead efforts, which include education, advocacy, swag

Jacob Harney, PhD avatar

by Jacob Harney, PhD |

Share this article:

Share article via email
A person speaks using a megaphone.

May will be a busy month for patients, doctors, researchers, and advocates in the Friedreich’s ataxia (FA) community as they participate in FA Awareness Month, an initiative for sharing information, personal stories, and support for those living with the rare neuromuscular disease.

Named after Nikolaus Friedreich, the German physician who first described it, FA primarily affects the nerves and muscles of the body, causing loss of coordination and muscle strength, along with other symptoms.

The Friedrich’s Ataxia Research Alliance (FARA) will lead the efforts with community conversations, educational events, online advocacy opportunities, and swag to wear and share with friends and family. The organization’s goal is to provide a better understanding of FA and its implications for the community. The group also offers information on research outcomes, treatments, and clinical trials.

“It takes our entire community to advance the research we need to treat and cure FA, and awareness is a powerful tool for bringing about change. This FA Awareness Month, how will YOU cure FA?,” the alliance states on Facebook.

Supporters are invited to share how they contribute to the FA community, whether by advocating, fundraising, or participating in research, using the hashtag #CommunityToCureFA on social media.

FARA is also encouraging participants to be creative and make #cureFA signs, or print premade ones, take photos with their sign, and send the best ones to [email protected] by May 10 to be featured in the FA Awareness Day collage. This year, FA Awareness Day will be observed on May 18.

Another great way to support FA research is by buying and wearing CURE FA swag. The FARA online store offers T-shirts, sweatshirts, baby onesies, and more, so supporters can take a photo in their new gear, and share it on FA Awareness Day.

Recommended Reading
fat molecules such as ceramides | Friedreich's Ataxia News | illustration of scientist working in lab

Gene-editing therapy restores more normal function in FA cell model

Community conversations, Flash Talks

To kick off the month, FARA will host the FA Community Conversations at 12 p.m. EST, Thursday. These quarterly webinar sessions provide learning opportunities for the community and insight into FARA’s initiatives.

In this session, Jen Farmer, FARA’s CEO; Kellyn Madden, patient engagement manager; and Ron Bartek, president and co-founder, will discuss ongoing research and offer an update on the FA drug development pipeline.

Also, community members will share their perspectives on how and why they help support FARA’s mission. There also will be an opportunity for a Q&A with all the panelists. Registration is available online.

This year, the annual Flash Talks webinar series will include two sessions and feature presentations on FARA-funded research projects from FARA Graduate Research Fellowship recipients and the FARA Fellow Program.

The first Flash Talk, on May 16, will include presenters from the University of Oklahoma Health Sciences Center, Boston College, Columbia University, and the University of Texas Southwestern.

On May 30, a second webinar will include presenters from All India Institute of Medical Science, California Institute of Technology, Stanford University School of Medicine, and Institut NeuroMyoGène, in Lyon, France.

Getting active for FA awareness

Getting active — indoors or outdoors — is also a great way to recognize FA Awareness Day and month.

In New Jersey, on FA Awareness Day, the Seaside Stride will kick off at 10 a.m with coffee and bagels, and a sneak peek at “the famous gift basket auction.” Immediately following is an “up-to” three-mile walk along the Seaside Park and Seaside Heights boardwalk. A distance to walk is entirely up to each participant.

The Lend Us Some Muscle Global Challenge 2024 encourages supporters to get active throughout May, whether it’s running, hitting the gym, doing yoga, or simply taking the dog for a walk. FARA, FARA Australia, FARA New Zealand, and Ataxia are all partnering for the challenge.

“With 15,000 people globally having a confirmed FA diagnosis, we want to show our support for each and every one of them, by doing any activity you love in May” the challenge website reads.

Those interested can register to fundraise online, do a favorite activity during May, and then share photos on social media with the hashtags #LENDUSSOMEMUSCLE, #CUREFA, and #FARAAUSTRALIA.