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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 | Kendall Harvey |Marisa Wexler |Jean Ker Walsh |Elizabeth Hamilton
There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide. I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood the basics of the progressively degenerative neurological condition, but I now realize that I had no real idea what was in store for me.
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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 |Katherine Poinsatte |Jean Ker Walsh |Elizabeth Hamilton
At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see FA when they looked at me. However, in the early days of my public walk with FA — no pun intended — the disease wasn’t easy to spot if you didn’t know what to look for.
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1 month ago | 
friedreichsataxianews.com | Jean Ker Walsh |Hawken Miller |Elizabeth Hamilton
Like many of us who get diagnosed with a scary illness, the question of “why me?” ran circles around my head. I chased that voice hard, wondering what I did to deserve Friedreich’s ataxia (FA). The answer I came to and always give that voice in my head is “You didn’t do anything. Disease is simply a part of life.”Now, I’ve added another simple twist: While your disease may not have happened for a reason, it can provide you with one.
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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 | Jean Ker Walsh |Kendall Harvey |Elizabeth Hamilton
When I was diagnosed with Friedreich’s ataxia (FA) in 1981, I was a sophomore in college. I lived in a newly renovated dorm that was wheelchair accessible, and, naturally, a woman who used a wheelchair lived with us. I did everything I could to avoid her. I remember heading for the side door when I saw her heading for the front door so I could escape crossing paths with her. While recalling that makes me cringe, I know I was never mean.
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2 months ago | 
friedreichsataxianews.com | Katherine Poinsatte |Marisa Wexler |Marta Costa Figueiredo |Jean Ker Walsh
People with Friedreich’s ataxia (FA) were found in a new study to experience more mental health symptoms — particularly decreased motivation and greater anxiety and depression — than individuals without the rare disease, who served as controls.
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2 months ago | 
friedreichsataxianews.com | Jean Ker Walsh |Marisa Wexler |Mary Chapman |Lindsey Shapiro
My husband, Dave, and I had a tough year in 2023, when Dave lost both parents. Our grief has lessened, but we’re still working through it. At times our ability to grieve was blocked because Dave and his siblings were trying to figure out what each parent would’ve wanted in their ceremonies and burials. This experience brought forth a little shadow in my head. As much as I can, I want to preplan my arrangements so my loved ones don’t have to plan while they grieve.
