How FARA brings together exercise, fundraising, and advocacy
There are several ways to get involved to help researchers find new treatments
I’m going to own it: I started 2024 with great ambition to work out more — followed by a fantastic lack of follow-through.
My goal was to run a 5K race in the summer. I bought new shoes and started training, but after a few weeks, I struggled to find the motivation to hit the streets.
Like most people in the Friedreich’s ataxia (FA) community, I want to support the Friedreich’s Ataxia Research Alliance (FARA) in finding treatments for this disease, which affects our 11-year-old daughter, Amelia.
Fitness and fundraising are both important. Yet I find myself weighted down by being a caregiver, so I need to recalibrate my expectations. Fortunately, FARA has made it possible to address both fitness and fundraising at the same time.
rideATAXIA Hometown
When Amelia was diagnosed, Kyle Bryant, the founder of the nationwide bike fundraiser rideATAXIA, was the first person with FA I found online. Since then, we’ve been blessed to meet many incredible people with FA at rideATAXIA events.
However, traveling can be a lot to coordinate and might not fit in your budget. But you can still ride for the FA team.
According to FARA, rideATAXIA Hometown “offers teammates the opportunity to ride individually or host local events for their community as part of the rideATAXIA Program Series. There are several hometown options to choose from based on your event and cycling experience.”
rideATAXIA Hometown offers three types of participation: an individual ride, a trail ride event, or a stationary ride event.
The individual event allows you to set up a webpage to solicit donations for an individual ride around your local area. Our neighborhood has a lot of local bike paths that would be perfect for this. It is low-stress and a great way to get some exercise in.
A trail ride event brings local families and friends together to fundraise for FARA. This option would allow Amelia to have family members, friends, and neighbors ride with her to show their support. This is something I can refer back to on the hard days, such as by telling Amelia, “Remember when all those people showed up for you?”
A stationary ride event is custom-made for those who like to get their wheels spinning indoors. A spin class is not my jam, but it might be yours. It would also be a great way to partner with a local gym.
Not a fan of bikes? FARA has you covered, too.
Team FARA
This program allows you to get creative with how you fundraise by allowing anyone to be a part of Team FARA. “Team FARA is made up of people around the globe who raise awareness for FA and fundraise for FARA,” the organization says on its website. “Whether you are participating in an endurance event, celebrating a birthday or milestone achievement, or just looking for a way to be involved — Team FARA is for you!”
I scrolled through the Team FARA website, and it was incredibly easy to use. Think of all the creative ways you can bring people together, build the community, and provide a way for people to support our mission to slow, stop, and reverse this disease. My mother-in-law holds a flower fundraiser every year as her way of contributing and raising awareness. The event has grown over the years, and her yard looks amazing.
Tearing down barriers to involvement
Amelia doesn’t always want her photo and story out there for local fundraisers in a way that might cause awkward social interactions with strangers. This is her journey and story, so I need to be respectful. With fundraising, I think carefully about the language I use, the photos I share, and the manner in which I handle communications.
An easy workaround can be sharing another person’s FARA fundraising page on my social media accounts with a comment about how I have picked this disease as a fundraiser for my birthday or because I was inspired by their story. We have a lot of inspiring stories in our community.
Do you have a teenager who needs service credit for school? Last summer, our eldest daughter wrote thank-you notes as a follow-up to the Energy Ball, a FARA fundraising event. It was a great way for her to get service hours and support her younger sister.
If you’re looking for something more passive, The Pathway is another way to get involved by donating an automatic monthly payment to FARA.
If you’re thinking, “I cannot take on one more thing,” that’s OK, too. I often remind myself to embrace my limitations and be grounded in where I am today.
And today, I’m lacing up my shoes and heading out the door.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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