What is your name?
My name is Hayden Howard.
How old are you?
I am 23 years old.
Where do you call home?
I live in Columbus, Ohio.
What is your education background and what are you doing now?
I graduated high school in 2020, and I am still on my gap year.
Who do you live with?
I bought a home in August 2025 and I live alone.
What does a typical day look like for you?
I typically wake up and go to work. Then I come home and usually do some computer work for my advocacy projects as an ambassador for FARA, or I hang out with my friends or family.
When were you diagnosed with FA?
I was diagnosed in August 2014.
Are there any others with FA in your family?
There are not any others with FA in my immediate family, but I recently discovered that I do have a cousin with FA. I have just never met her.
Describe your transition from walking to using a walker or wheelchair.
My transition from walking to a walker was hard for me to adapt to because I had been sick and was pretty much on bedrest for about two months. It was like I laid down one day and then I just couldn’t get up and walk independently anymore. Switching from a walker to a wheelchair made things easier for me to be independent.
What are your favorite hobbies or special interests?
My favorite special interest is traveling, so I’m always thinking about how I can create opportunities for myself to travel.
What is a daily hack that makes life easier for you?
A daily hack that makes life easier is to get your phone attached to a wristlet or bracelet.
When FA gets you down, what do you do to feel better?
When I get upset about FA, I just take a nap.
What is one way living with FA has positively affected your life?
One way that my life has been positively affected by FA is all of the other people with FA that I have met. I just have so many more new friends.
What is the first thing you want to do when a cure or treatment for FA is found?
The first thing I’m going to do when there is a cure is travel to a really non-accessible place in the world.
Tell us a little more about you.
A little more about me is that I have an older brother and a younger sister, neither of them have FA. I grew up showing goats, pigs, and chickens in the fair. I played volleyball and soccer in junior high. I started having trouble walking independently when I was 18 and started using mobility aids when I was 19. I currently serve as an ambassador for FARA and a member of the Lexeo cardiac advisory council and am involved with policy advocacy. I am currently planning a 1920s casino themed gala to benefit FARA taking place in Columbus, Ohio, in February 2027, and I would love to see everyone there!
Interview by
Sam Dupre