Name: Alyssa Hammers
Age: 23
Where do you call home? Omaha, Nebraska
What is your education? How will FA add to your future? I have an associate degree and currently attend the University of Nebraska at Omaha, majoring in communications. My goal is to raise awareness about FA and ataxia, especially through social media. FA has given me a purpose to advocate and educate others about the condition.
Who do you live with? I live with my mom and dad.
What’s a typical day for you? My day starts at 4:30 AM so I can get to the gym by 5. I work as a Pre-K teacher at a daycare from 6:30 AM to 1:30 PM. After work, I head to school and usually stay afterward to do homework. Then I go home, eat dinner, shower, and get ready for bed.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed with FA at 19. Before my diagnosis, I found a video on TikTok about FA and recognized the symptoms. I brought it up to my neurologist, who initially thought it was unlikely and suspected a vitamin deficiency. She tested my frataxin levels just to rule it out, but they came back extremely low. That’s when she diagnosed me and ordered genetic testing to confirm it.
Are there any others with FA in your family? No.
Describe an adaptation and/or transition you have had to take due to living with FA: I’m still mobile and fairly independent, so I haven’t needed to transition to a walker or wheelchair yet. However, I’m mindful of my limits and make small adjustments as needed to stay safe and manage my energy.
What do you do to stay active? I go to the gym every day and lift weights six days a week. At work, I walk a mile during outside time with the kids.
Do you have any hobbies or special interests? I love working out, traveling, reading, going to the lake, and spending time with friends.
What is a good trick to make daily life easier? Getting enough sleep and sticking to a daily workout routine really helps my day go more smoothly.
When FA gets you down, what do you do to feel better? I spend time with friends and focus on self-care, whether it’s watching a show, driving around and listening to music, or working out.
What is one way living with FA has positively affected your life? It’s taught me to appreciate each moment and truly live in the present.
What is a favorite motivational quote of yours? “Live in the moment.”
What is a piece of advice that someone with FA has given you that inspires you? “The best thing you can do for yourself is to keep moving.”
What is the best advice YOU could give to someone newly diagnosed with FA? FA can feel isolating, but you’re never alone. There’s a strong community that understands exactly what you’re going through and is here to support you.
What’s the first thing you want to do when a cure/treatment for FA is found? Play sand volleyball.
“I have FA but FA doesn’t have me.” What does this mean to you? FA is only one part of me, it doesn’t define who I am or what I’m capable of.
How do you live your life in the face of adversity? By focusing on the present. The future is uncertain for everyone, so I do what makes me happy now, like traveling and making memories.
Tell us a little more about you: I’m a Pre-K teacher at a daycare where I’ve worked for a little over five years. It’s been amazing watching the kids in my class grow and learn, most were infants when I started, and now they’re getting ready for kindergarten! I love spending my free time with family and friends. I’m especially close to my younger sister. Working out is a huge part of my life and is something I genuinely look forward to every day. This summer, I’m thrilled to be studying abroad in Florence, Italy for a month, and I can’t wait for the adventure ahead!
Interview by:
Noah Griffin