Friedreich's Ataxia Research Alliance

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below. New Meet the Community interviews are posted every Monday, so be sure to visit often. Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!

Jason and Alex Dagley

Name: Jason Dagley

Age: 29

Where do you call home? Frisco, Texas

Education: Some college

How long have you been living (or known you are living) with Friedreich's Ataxia? I have known I have FA since I was 10. My symptoms started around the age of 4-5. I was having difficulty in gym class doing aerobics. My coordination was off. The teacher suggested that I see my doctor. The doctor did some assessments in her office. She suggested that I have further tests done at Scottish Rite Hospital. After a thorough neurological test they really didn't know. In my medical record, it states that it couldn't be FA because my parents are only related by marriage. In the middle of all this we moved to Baton Rouge, Louisiana. We were hooked up with a neurologist at children's hospital in New Orleans. She conducted more tests, nerve and muscle biopsy, EMG, nerve conductions, an MRI and a spinal tap. They even tested my parents with some these. Nothing was conclusive.

Sam Brown

Name: Sam Brown

Age: 14

Where do you call home? Allen, Oklahoma

Education: 8th grade

How long have you been living (or known you are living) with Friedreich's Ataxia? I was eight years old and in second grade when I was diagnosed.

Describe your transition from walking to walker/wheelchair. My chair has made it so much easier getting around - kinda made me lazy. Although, I do wish I could keep my legs straight with a walker. I started using a chair full-time before I was 10. I really don't remember much about that time.

Preston Lynch

Preston (in the driver's seat) and his friend, WesleyName: Preston Lynch

Age: 21

Where do you call home? South Texas

Education: I am currently going to college at Texas A&M University - Corpus Christi. I am a junior studying for a bachelors in education.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was 12 my parents noticed that I was uncoordinated and took me to a pediatrician. He had an idea of what was wrong but he wanted to be certain and that's when the blood tests started. Two weeks later I found out I had FA.

Raena

Name: Raena

Age: 13

Where do you call home? Sioux Falls, South Dakota

Education: 8th grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? One year.

What do you like to do to stay active and what type of exercises do you do to stay strong? Playing with friends, theater and Pilates.

What's your most comfortable pair of shoes to wear? No shoes.

Do you participate in any adaptive sports or recreational activities? Performing Arts.

Matthew Di Iorio

Name: Matthew J. Di Iorio

Age: 33

Where do you call home? Johnston, Rhode Island

Education: I received a Bachelor of Science in Buisness Administration in 2004 from Bryant College.

How long have you been living (or known you are living) with Friedreich's Ataxia? 20 years, August 4, 1994. I was diagnosed in Rhode Island by Dr. Karen Kerman, then she sent me to Boston for a second opinion.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My maternal grandfather had Parkinson's-isms. His neurologist claimed he did not have Parkinson's disease.