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3 weeks ago | 
friedreichsataxianews.com | Matthew Lafleur |Lindsey Shapiro |Kendall Harvey |David Riley
Note: This column describes the author’s own experiences with Botox injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.Living with Friedreich’s ataxia (FA) is a journey that tests the limits of one’s resilience. The progressive nature of this rare neurodegenerative disease leads to symptoms that make daily activities increasingly difficult.
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3 weeks ago | 
friedreichsataxianews.com | Jean Ker Walsh |Matthew Lafleur |Elizabeth Hamilton |Kendall Harvey
Before my neurology appointments, I practiced tasks like touching my forefinger to my thumb, forming the “O” of the “OK” symbol. Part of my exam was, and still is, measuring how quickly I can do that repeatedly. I was determined to excel in my neurological exam. Now, I look back and laugh at my younger self. What was I thinking? I’m pretty sure I just wanted good news, and my way of trying to control that was to make those Os as quickly as I did the year before.
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1 month ago | 
friedreichsataxianews.com | Jean Ker Walsh |Matthew Lafleur |Kendall Harvey |Elizabeth Hamilton
Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling her backside enthusiastically, she sidles up next to me so I can attach her leash. It’s enjoyable for both of us. I love being outside exploring my neighborhood, and there are so many scents for Wendy to smell.
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1 month ago | 
friedreichsataxianews.com | Matthew Lafleur |Katherine Poinsatte |Elizabeth Hamilton |Jean Ker Walsh
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than inconvenient. Put simply, these challenges make every routine task more demanding. Despite these hurdles, I strive to maintain a sense of normalcy in my personal and professional life.
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1 month ago | 
friedreichsataxianews.com | Kendall Harvey |Steve Bryson |Matthew Lafleur
So much of living with a progressive, lifelong disease like Friedreich’s ataxia (FA) is mentally processing and accepting the physical changes it brings. But with the widespread degeneration of my body and the resulting decline in my abilities, that can feel like an overwhelming task at times. Every night, while brushing my teeth and getting ready for bed, I think about how my body performed that day.
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1 month ago | 
friedreichsataxianews.com | Steve Bryson |Matthew Lafleur |Margarida Maia |Andrea Lobo
The U.S. Food and Drug Administration (FDA) granted priority review to PTC Therapeutics‘ application seeking the approval of vatiquinone, an oral treatment for children and adults with Friedreich’s ataxia (FA). The agency will announce a decision by Aug. 19, the company said. “We are excited to be one step closer to bringing an approved therapy to all patients with Friedreich’s ataxia,” Matthew B. Klein, MD, CEO of PTC, said in a company press release.
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2 months ago | 
friedreichsataxianews.com | Matthew Lafleur |Margarida Maia |Jean Ker Walsh |Elizabeth Hamilton
Navigating life with Friedreich’s ataxia (FA) involves traversing an unpredictable landscape where each step presents new challenges. This year began with particular frustration for me, yet I find solace in the unwavering support of the FA community and unexpected inspiration from the animated film “Flow.”Early 2025 was daunting. I underwent two outpatient surgeries in quick succession — the first surgeries of my life, aside from wisdom teeth removal.
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2 months ago | 
friedreichsataxianews.com | Kendall Harvey |Marisa Wexler |Matthew Lafleur |Jean Ker Walsh
I’m frequently asked how I handle the relentless progression of Friedreich’s ataxia (FA) with a smile on my face. My answer is simple: I don’t do it on my own. Without the support of all the wonderful people in my life, I’d still be that scared and confused statue who was terrified of the future after my FA diagnosis in 2013. Each member of my village has played a different and specific role in helping me navigate life with FA.
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2 months ago | 
friedreichsataxianews.com | Matthew Lafleur |Kendall Harvey |Margarida Maia
I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind me of the Friedreich’s ataxia (FA) community, but it did. That’s because we’re also a group that for years had remained in the shadows and yearned for understanding and acknowledgment. Back when I was diagnosed with FA as a child, this rare disease wasn’t even well known in medical circles.
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Dec 25, 2024 | 
friedreichsataxianews.com | Matthew Lafleur |Kendall Harvey |Jean Ker Walsh |Elizabeth Hamilton
When I introduce myself, I always say: “I’m Matt, and I have Friedreich’s ataxia.” It’s not just a fact; it’s a part of the story that’s shaped me. Part of me can’t stand thinking that a progressive disease dictates my life. That part of me refuses to let it be true. With time, though, I’ve learned that while Friedreich’s ataxia (FA) has profoundly shaped my life, it doesn’t define me.
