Tag: rare-disease
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Preventing Falls: Empowering Strategies for FA Patients
Living with Friedreich’s ataxia means balancing independence with safety every day. After a recent fall, I reflect on the physical, mental, and emotional realities of mobility, from strength training and walking aids to self-advocacy and resilience — and why refusing to let fear stop you from fully living matters most.
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Reflecting On My College Journey with Friedreichs Ataxia
College is intimidating, especially when you’re navigating it with a progressive disability. After being diagnosed with Friedreichs Ataxia at 16, I entered college unsure of what my future would look like. What I didn’t expect was how those years would force me to grow, find my voice and advocate not just for myself, but for…
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DON’T WAIT TO CELEBRATE
Life with FA is challenging, but it’s taught me to find joy even in the waiting. Inspired by a book called Suffer Strong, I’ve learned that celebration isn’t about perfect circumstances—it’s about perspective.
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Empowering Lives Through Travel: The Being Positioned Experience
This post highlights a six-day San Francisco trip funded by Being Positioned, a nonprofit supporting people with rare diseases. It details the application process, trip itinerary, accessibility insights, and the personal impact of traveling while living with Friedreich’s ataxia.
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The Cause for Community: Getting Connected With My FAm
Making connections in the patient community has been the best part of my life with Friedreichs Ataxia. Here’s the journey of how I got plugged in and what that has been like for me.
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How Clinical Trials Transformed My Life with Friedreichs Ataxia
I don’t know what my life would look like if I hadn’t nonchalantly agreed to join my first clinical trial at age 17, but I sure wouldn’t want to find out. Joining a clinical trial has brought some of the biggest blessings into my life and helped completely flip my outlook on life with FA.…
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The Path to Purpose: Rare Disease Week 2025
Advocating at Rare Disease Week in Washington D.C. showed me how my weaknesses can be used to strengthen others, which I believe is key to living a purpose-filled life.
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Mental health & FA: Not the same
As I discussed in my last blog post, the hardest part of living with Friedreichs Ataxia for me is the mental health struggles I’ve dealt with that stem from grief of a life that isn’t at all what I imagined it’d be. Well, allow me to respond to that. As I wrote previously, I believe…
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‘No manual for that’: Mental health & FA
One of the things I want people to know about life with Friedreichs ataxia is how prevalent the struggle with mental health is. Anxiety, depression and hopelessness can often put you in a cloud, but I also want to share a message of hope that waits on the other side of that cloud.
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Why I Ride
I never did learn to ride a bike as a kid. That’s why my first ride on a recumbent trike (pictured above) at RideAtaxia Orlando in 2019 was such a big deal. It looked funky – nothing like a real bike. It seemed like something someone who couldn’t ride a bike rode so they could…
Knowin' Noah 