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FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

Allison Dana

Allison DanaName: Allison Dana

Age: 39

Where do you call home? Fort Mill, SC (just south of Charlotte, NC)

Relationship status? Do you have children? Married for eight years with six-year-old identical twin girls.

Occupation/Employment: Stay-at-home Mom.

Education: Bachelor of Science in Nuclear Medicine Technology.

Ashlea Smith

Ashlea SmithMy name is Ashlea Smith, and I was diagnosed with FA at 16 in 1998. I'm 35 years old and live in Aliquippa (20 miles west of Pittsburgh) with my husband, 13-year-old stepdaughter, 5-year-old son, dog, and 2 cats. I work part-time for a nonprofit organization that serves children and families in the local area.

I began showing symptoms such as loss of balance and coordination at the age of 14, and it became most evident in activities that I had previously excelled in such as cheerleading, dance, gymnastics, swimming, and softball. After my diagnosis, I was able to finish high school without really confronting too many obstacles of the disease. My family and friends were integral in getting me through those years. I started having more trouble with my mobility throughout college and really struggled with how to come to terms with what was happening to my body. I pushed so hard against using any kind of mobility aid and tried desperately to keep my independence.

Morgan Layton

Morgan LaytonName: Morgan Layton

 

Age: 27

 

Where do I you call home: Sewell, New Jersey

 

Education: Some College but in a "Work-study Program."

 

What is your relationship status: Single

 

Who do you live with: I currently live with my parents and brother, David (24, has FA too) and 2 dogs and 2 cats.

 

What is a typical day for me: I wake up to get a shower, get dressed then feed my cats. I usually just watch tv most days or just hang out with family. I also enjoy watching movies and love to bake!

 

When were you diagnosed: I was diagnosed by Dr.Lynch (who's the best!) at CHOP. When I was 16 I'm now 27 years old! I use a walker daily and a wheelchair for long
distances.

 

I chose to become a Fara Ambassador because I deal with it every day and understand the struggles with this and want to help others with fa to understand and deal with it in a positive way! Some days it's hard, but I always try to think positive and move forward! CureFa

Chelsea Conley

Chelsea ConleyI was 12 years old when I played basketball for my school. That is when I first started getting chest pains that kept me off of the court a lot that season and I never played again. I was misdiagnosed with exercise-induced asthma. It wasn't until 5 years later that I was correctly diagnosed with hypertrophic cardiomyopathy. When I was 15 I got mono, which kept me down for weeks. This was the unfortunate beginning of my symptoms, however, I did make it through high school graduation in high heels (barely)!

 

Fast forward to age 24, when I was correctly diagnosed with FA at The Ohio State University. This is when I got my first walker, which has since upgraded to a manual wheelchair I grew up with my face constantly buried in a book. I never went anywhere without one; school, basketball practice, even a trip to the mall meant I had a book in my purse. After high school, I wanted to move to California and go to UCLA. Naturally, I wanted to excel in creative writing and become an English Lit teacher. Since I didn't know what was wrong with me, I decided to stay home and went to a local technical college where I studied Business Management.

Vlad Ayriyan

VladAyriyan

Hello, my name is Vladimir Ayriyan, I’m 26 years old and I was diagnosed with Friedreich’s Ataxia when I was nine years old. I was born in Armenia, my family and I moved to San Diego, California, when I was three years old.

Going through my school years with this disease was very difficult because your body keeps getting worse and constantly having to adjust due to the progression of the disease. I have been permanently wheelchair bound for eight years. I got my associates degree when I was 21, I wanted to further my education and pursue a bachelor’s degree but fatigue got the best of me.

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