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FARAFARA Cure FA

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.

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.

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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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Jacob Ferguson

JacobFergusonMy name is Jacob Ferguson. I am 22 years old and live in Montgomery, Texas with my family, including my 17 year old brother who also has FA. I am working on a business degree at LoneStar College and Sam Houston State University. I love to work out and work with a trainer at our local gym a few days a week.

I am always up for adventure. We just returned from a trip to Mexico. We had a blast! We were able to scuba dive in the resort dive pool, parasail over the ocean, and deep sea fishing all for the first time!

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Matt Lafleur

MattLafleurName: Matthew Lafleur

Age: 31

Where do you call home? Opelousas, Louisiana

Education (degree[s]): BA in English, MA in general mental health counseling

What's a typical day for you? I live next-door to my family’s company where I work with family nearby, so I live on my own and am able to go to work next door on weekdays. Most days, I write for the blog I contribute to about being a (bad) Catholic dealing with FA. The blog is called Sick Pilgrim. Less often, I like to volunteer as a counselor in my area.

How long have you known you are living with FA? About 20 years.

Are there any others with FA in your family? My younger sister also has FA. She is 29. She and her husband have two incredible kids, and they live next door.

Describe your transition from walking to walker/wheelchair. My symptoms became apparent when I was in junior high/high school, so at a time when I most wanted to just fit in with everyone else, my clumsy walk and poor coordination made me stick out. I refused to accept the help from a wheelchair in high school, mostly because I was hardheaded. In college, I realized that there were no walls I could hold onto for support when I had to cross campus to get to class, so I finally agreed to use a wheelchair. And what really surprised me was that being in a wheelchair, instead of imprisoning me, gave me a small and newfound sense of freedom - no longer was I the one everyone had to wait for; no longer was I consistently putting all my strength into remaining upright. I would have scoffed at this idea, but found it to be absolutely true - that sometimes accepting help can make us more independent, not less. 

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Nygel Lenz

NygelLenz1My name is Nygel Lenz, and I am 41. I live in Florida with my beautiful and amazing wife, our lovable pug, and our crazy fish. In short, I began having Friedreich’s Ataxia (FA) symptoms at 11; was certain that my balance was a problem at 15; and finally diagnosed at 19.

Growing up, I was a fairly typical, active boy. I played sports like football, soccer, basketball and baseball. I also loved my bike and skateboard, especially building crazy ramps and jumping them or doing tricks. Basically, I was outside doing some sort of activity whenever I had an opportunity.

My first FA symptom was scoliosis at age 11. I had spinal fusion to help straighten my back at age 15. As soon as I got up and started walking again, I realized that my balance was different. (In hindsight, there were other signs that I had ataxia, but it was obvious after that surgery.) Walking straight, having my feet always go where my brain directed them became an issue. It scared me!

I began seeing a neurologist after the surgery—at the beginning of my sophomore year in high school. I went all the way through high school undiagnosed. 

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