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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!


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 HannahName: 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

imageName: 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

Drake and Trisha

Name: Drake (aka bub)

Age: 8 years old

Where do you call home? Ohio

Do you have any brothers or sisters? I have a sister named Zoe.

What grade are you in? I am in the second grade.

What do you like to do in your free time? Play outside, play DS and play Xbox.

How long have you been living (or known you are living) w/fa? (When and how were you diagnosed?) I was six when I found out. They gave me a blood test that hurt.

Brittany Wiseman

Name: Brittany Wiseman

Age: 25

Where do you call home? St. Louis, Missouri

Occupation/Employment: I work for Farmers Insurance. My manager's mother has MS, so she is familiar with the hardships disabilities can cause. She is incredibly understanding of FA and for that, I am beyond thankful.

Education: I originally went to school to become a vet tech. As my FA progressed, I realized the physical demands of this career were challenging. I changed my major to social sciences. Ultimately, I landed in the insurance field, became licensed, and chose this as my career.

How long have you been living (or known you are living) with Friedreich's Ataxia? I've been living with FA for 10 years. I was diagnosed at the age of 15 when I was doing routine testing prior to having scoliosis surgery. I was being tested for Neurofibromatosis (a disease my brother has) I had a horrifying experience. I was told "good news is you don't have Neurofibromatosis, bad news is you have Friedreich's Ataxia."

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