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!

Luke and Sandy

Name: Luke Cooper

Age: 12

Where do you call home? I live in St. Augustine, Florida with my dad, mom and three brothers, Kade 11, Brock 6, and Kolt 2.

What grade are you in? I'm in 7th grade at R. J. Murray Middle School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed at age nine in December 2011 after testing at Wolfson's Childrens Hospital in Jacksonville, Florida.

Describe your transition from walking to walker to wheelchair. I can still walk unassisted, but do use a walker at school for balance and sometimes a wheelchair. My teachers and friends at school are very helpful and supportive.

Ryelee and Mindy

Name: Ryelee Victoria Burris

Age: 8 years and 11 months.

Where do you call home? I live in Forney, Texas and go to school in Kaufman, Texas.

What grade are you in? 3rd grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having problems when I was 3, but was diagnosed with Guillen Barre Syndrome. My mom took me to a neuromuscular specialist in Houston, TX when I was 5. He did the genetic testing and on May 25, 2011, I was officially diagnosed with FA.

Do you have any known family history of similar symptoms to FA? No.

Alyx Holliday

Name: Alyx Holliday

Age: 18

Where do you call home? Virginia Beach, Virginia

Education: I am currently a senior at Salem High School in Virginia Beach. Class of 2015!

How long have you been living (or known you are living) with Friedreich's Ataxia? I found out I had FA when I was five. My family noticed my motor skills were not where they should be, so after a year of testing, a genetics test told me I had FA.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My family thinks my great great uncle had FA. He was in a wheelchair and had a heart condition.

Hannah Barnhill

Meet Hannah Name: Hannah Barnhill

Age: 19

Where do you call home? Eastern North Carolina

Education: I am currently studying Sociology at East Carolina University (GO PIRATES!) and am on track to declare my major officially in the spring. I want to work with kids who also have muscle diseases to motivate and encourage them that this is not where it ends!

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was growing up, I was always very clumsy. Doctors insisted that it was because I grew so fast that I hadn’t “grown into my legs”. However, when I was 17 and 5’9, I had still not “grown into my legs,” so my doctor recommended that I be seen by a neurologist for further testing. After several MRI’s and genetic testing, I was officially diagnosed with Friedreich’s Ataxia.

Brooke Ziegler

Name: Brooke Ziegler

Age: 26

Where do you call home? Wichita, Kansas

Relationship status? Do you have children? In a relationship.

Occupation/Employment: Stay at home dogmom/girlfriend, hehe. But really I seasonally work for a local business, I volunteer a lot and I am a consultant for Scentsy fragrance and Velata fondue.

Education: Bachelors of Arts in Strategic Communication Alma Mater: Wichita State University