What is your name?
Savannah Glenn
How old are you?
I am 25 years old.
Where do you call home?
Houston, Texas
What is your education? What is a current goal you have with your education? How will FA add to your future career?
I have my bachelor’s of science in Animal Science from Texas Tech University, class of 2023! I want to get my master’s, but I’m still deciding between an MS in Biology or an MBA. I currently work in a vivarium taking care of laboratory mice. The research side of animal science really intrigued me even more after my FA diagnosis and my personal involvement with clinical trials and studies.
Who do you live with?
I live alone with the exception of my four pets: my 8-year-old chocolate lab, Emmitt, my two cats, Junie and Twig, and my bearded dragon, Cleo!
What’s a typical day for you?
I work full-time in person, so most of my days revolve around that. After taking care of all my pets in the morning, I ride the MetroLift to work and care for mice all day. Then I come home on the MetroLift and take care of my pets again. I guess it’s safe to say I’m an animal person! Somewhere in there, I take care of myself too.
How long have you known you are living with FA? When and how were you diagnosed?
It’s been almost nine years since I was diagnosed. Around 2016, we began trying to identify the cause of my clumsiness, fatigue, choking, and poor coordination. On August 11, 2017 — my 17th birthday — my parents received confirmation from genetic testing that I had Friedreich’s ataxia. They weren’t planning on telling me right away, but I had a cardiologist appointment at the end of that month. She noticed the shape of my feet and mentioned “Friedreich’s ataxia.” I looked it up while still on the exam table and knew immediately that’s what it was. On the ride home, my mom confirmed my suspicions. This August will mark nine years since that day.
Are there any others with FA in your family?
No.
Describe your transition from walking to a walker/wheelchair.
I walked unassisted until I was 19 and briefly used my dog, Emmitt, for counterbalance. At 21, I began using a walker, mostly because I started going to bars in my college town and wanted others to know something was “wrong.” This January, at 25, I had a bad fall alone in my kitchen that caused a severe lumbar spine and SI joint injury, complicated by my FA and previous spinal fusion. I was basically done walking at that point — it caused too much pain and was too unsafe. I got my first wheelchair in February 2026. I always expected this moment to be sad, but it really wasn’t. It was actually a huge relief and gave me more freedom!
What do you like to do to stay active, and what type of exercises work for you to stay strong?
I used to go to physical therapy twice a week and loved it. I still want to get back to that, but it’s hard while working full-time. I still do a bunch of different things with my friends — I like going to the zoo, swimming, and having picnics (the exercise part is getting to the picnic!).
Do you have any hobbies or special interests?
I love my pets and spend a lot of time with them. I also love watching basically any reality TV and musicals, if that counts!
What is a good trick to make daily life easier?
You can never get too much sleep! I also like finding tools that aren’t necessarily designed for disabled people but actually make my life much easier — for example, electric salt and pepper grinders and Roombas!
When FA gets you down, what do you think or do to feel better?
I just start by doing other things I enjoy — playing with my pets, watching reality TV, or hanging out with my friends. It really helps to give yourself a mental break, because FA can take so much out of you, more than just physically.
What is one way living with FA has positively affected your life?
Having FA has really humbled me and made me more patient and gentle. This disease requires you to be so patient with yourself and others, and I feel like it’s taught me a lot about life. You have to accept what you’ve been given.
What is a favorite motivational quote of yours?
“Come What May” — Ewan McGregor in Moulin Rouge! Or the Serenity Prayer.
What is a piece of advice that someone with FA has given you that encourages and inspires you?
At the Cure FA Soirée, I kept hearing people say, “Today is your best day. Then tomorrow is your best day.” It sounds backwards, but it’s our reality. Instead of wishing I could go back or worrying about what’s ahead, I try to make the most of today. Tomorrow will become my new best day, too.
What is the best advice YOU could give to a person who has been newly diagnosed with FA?
Don’t let yourself believe that your life is over because of this diagnosis. It’s okay to grieve and be scared, but don’t spend so much time mourning the future that you miss the life you still have right now. You’ll continue to make friends, laugh until your stomach hurts, fall in love, build a career, travel, and create memories. Life may look different than you imagined, but it doesn’t stop.
What is the first thing you want to do when a cure for FA is found?
I’d take Emmitt for a long walk and play the longest game of fetch we’ve ever had. Then I’d go home, close my bedroom door, and dance by myself until I couldn’t anymore.
“I have FA, but FA doesn’t have me.” What does this statement mean to you?
FA affects almost every part of my life every single day, but it isn’t my identity. I’m still a scientist, a daughter, a friend, an animal lover, and someone who laughs way too hard at dumb videos on the internet. FA changes how I do things, but it doesn’t get to decide who I am.
How do you live your life in the face of adversity?
I try not to let fear make my decisions. There are definitely hard days, but I remind myself that there are no “perfect” circumstances. I spend time with friends, spoil my pets, travel when I can, and keep making plans for the future. If something matters to me, I’ll usually find a different way to do it instead of giving up on it altogether.
Tell us a little more about you.
Whether it’s researching my family history, designing jewelry, planning a trip, or rearranging my apartment, I love having something to obsess over. I’m very detail-oriented and love to focus on something and give it my all. I also spend way too much time with my pets, watch an embarrassing amount of bad television, and never turn down a chance to spend time with friends.
Interviewed and Edited by
Sam Dupre