My family and I went to Tulum, Mexico for Thanksgiving. We love to travel on Thanksgiving because, to us, the most important part of the holiday, and any holiday, really, is to spend time together. We tend to do all-inclusive beach resorts because it’s easy with kids and there is…
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Last week, my mom and I visited my aunt and uncle, or her sister and brother-in-law. The trip was different from most of the trips I take, and I’m recognizing that my Friedreich’s ataxia (FA) progression is likely to blame. For starters, although I travel fairly often, I don’t usually…
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…
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…
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…
The long drive back home was uneventful as the sky shifted from a clear blue to an ominous collection of thunderclouds. If it was a metaphor, I was too tired to notice. We drove on. I asked my buddy Ryan, who was driving my van, what his favorite part of…
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…
When Friedreich’s ataxia (FA) came into my life in 2013, I thought all the hopes and dreams I’d held would be wiped out. I planned on being a fun and adventurous wife and, God-willing, a mother one day. Instead, I had to face the harsh reality that I would…
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…
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…
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…
“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…
Recent Posts
- The forced adversity of Friedreich’s ataxia can lead to personal growth
- Confronting the illusion of choice with Friedreich’s ataxia
- Mouse model shows iron imbalance in FA varies by tissue and age: Study
- How I field the question, ‘Why are you in a wheelchair?’
- Scientists link shrinkage of key brain pathway to FA motor symptoms