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A Shift in Perspective Can Change Everything

Hello and happy holidays! Thanksgiving is quickly approaching, and this time of year can be so hectic that it’s often over before we have time to process it. I hope you are able to carve out a few moments during this season to ponder gratitude and to focus on some…

The Parallels Between Living With FA and Riding My Trike

After I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was desperate to make a positive difference in my future with the disease. That search led me to rideATAXIA, a nationwide program of bike rides organized by the Friedreich’s Ataxia Research Alliance. People all around the U.S. work…

Lessons I’m Learning About My Mental Health

I participated in a group discussion with fellow Friedreich’s ataxia colleagues Matt Lafleur and Kyle Bryant, along with host Ally MacGregor, to kick off “Movember,” a monthlong effort that aims to raise awareness about men’s health issues. Although we’re…

I’m Not Alone in Carrying the Burden of FA

In my opinion, one of the worst things about living with a disability is feeling like a burden to others. Although I am the one going through the progressive degeneration of my abilities due to Friedreich’s ataxia (FA), it’s the people in my life who have to help carry…

My Independence May Change, but Not Go Away

I’m spending a couple days on the road right now, sharing some of my story and philosophies at a fundraiser. This is the first in-person event I’ve participated in since friends at Amicus Therapeutics invited me and my podcast co-host, Kyle Bryant, to their office in…

In Search of Peace, Love, and a Cure for FA

Hello, everyone! I am so grateful you are taking a few moments of your day to join me here. I hope you can spend some time reflecting on happier days in the past and looking ahead toward a brighter future. Even if your current reality feels overwhelming, please know that…

Recalculating the Path of My Life with Friedreich’s Ataxia

If life with Friedreich’s ataxia (FA) were charted through a GPS navigation system, it would constantly say “recalculating.” The relentlessly progressive nature of this disease affects all areas of my life, both expectedly and unexpectedly, bringing changes to both path and destination. Before my ankle break and reconstructive…

I’m Learning the Balance Between Giving and Receiving

“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it. I was at the Lafayette Regional Airport in Louisiana, and the only bathroom beyond the security checkpoint wasn’t even close…

I No Longer Let Fear of the Future Control My Life With FA

The first thing I experienced after my Friedreich’s ataxia (FA) diagnosis in 2013 was fear for my future. I remember reading words like “wheelchair-bound,” “terminal,” and “average life expectancy of 35.” That meant I had already lived more than half of my life. And while my first 25 years had…