What at first glance may appear to be just a regular bike ride for Naperville residents Ellie Martin and her mom Suzy, they’re actually pedaling with a purpose, raising money for the National Ataxia Foundation.
Living with ataxia
Martin was born with an impaired cerebellum, the part of the brain that controls muscle coordination and balance. But it wasn’t until just two years ago that she discovered an official cause, an incredibly rare disease, called cerebellar ataxia.
“Because of the genetic testing, we found that it was due to a genetic mutation,” said her mom Suzy. “There are about 13 other people that we know of in the world that have this rare type of cerebellar ataxia.”
“Ataxia is a neurological disease that affects your balance, coordination, speech, vision and fine motor skills,” said Ellie. “Sometimes I will use a walking stick. I don’t drive and obviously my speech is affected too, because I don’t speak faster than others.”
Overcoming adversity
Still, that’s not getting in the way of Martin biking 200 miles during the month of June, while spreading awareness of ataxia with the 2023 Summer Match Challenge.
“We always wanted to do a biking fundraiser in the summer, and I was scrolling through social media, and I found a post on the National Ataxia Foundation page that said the entire month of June, every dollar fundraised will be doubled, so that was the perfect time to do the bike fundraiser,” said Ellie.
“Most people ask me, ‘What’s ataxia? I’ve never heard of it.’ So I want to tell them how it affects a person,” Ellie added.
She has been riding on an adaptive bike since she was five years old, always in tandem with her mom.
“We always love bike riding. It was one thing we could do together, it was just something we spent our summers doing together, and it was also good therapy for her,” said Suzy.
But now that she can strap into her own Catrike – a bicycle made for people with balance challenges – she has a newfound sense of freedom.
“With my bike, I feel like it doesn’t affect me at all because it has three wheels instead of two, so I’m not trying to balance as much, and I’m lower to the ground, so it makes it easier for me to ride. So it’s more stable and not as wobbly,” said Martin. “It’s really nice because when I’m riding, I get to take a break of all my symptoms.
Fundraising progress
With about two weeks left in the month, she has 60 miles left and is about halfway to her $2,000 fundraising goal. Money raised will go towards research, in hopes of one day finding treatment for ataxia.
“I am so proud of her. She is motivating to so many people for all that she has accomplished,” said Suzy.
“I just try to think positively about things and stuff, and stuff that I can do instead of I can’t do. And that’s what helps me the most,” said Martin.
Those who wish to support Ellie on her journey can donate through the National Ataxia Foundation.
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