Tag: rare-disease
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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…
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RARE IS REAL
Rare Disease Day is approaching, but what does that have to do with you? February is national rare disease month, and rare disease day lands on the final day of February each year. Being leap year, this year it’s on the rarest day in existence: February 29. This month, more than ever, I have realized…
Knowin' Noah 