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FARA
Cure FA
FARA Ambassador ProgramThe 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.
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.
My name is Scarlett. I'm 22 years old and I live with Friedreich's Ataxia. I was diagnosed at age 14 and I didn't start having symptoms until I was nearly 20. My story is quite unique because I was diagnosed years before symptoms appeared. When I was 10, I had foot surgery and didn't heal very fast. Because of this, the doctors suspected a neurological disorder. Then 4 years later, I met with the right neurologist who identified FA right away.
Hey! My name is Allison Bouchard and I am 23 years old living in Bowdoin, ME. I was diagnosed with FA in 2006 when I was 11, after my sister Noelle was diagnosed about a year earlier. We both live together with our family, her boyfriend Matt, and our two dogs. I've been using a wheelchair since I was in high school. I was always a clumsy kid growing up, so my family wasn't too alarmed when I started showing symptoms until Noelle (then 16) did. I can remember feeling fatigued during gym class as far back as in 1st or 2nd grade.
Hi! My name is Shandra Trantham. I am 21 years old and live in Gainesville, Florida. I remember being just 8 years old when I first noticed my balance was deteriorating. I was in gymnastics and suddenly couldn't walk on the balance beam anymore. A few years after that I developed scoliosis and was put in a brace. Finally, at the age of 12 everything came together. My ortho doctor noticed my gait as I walked down the hallway. I still remember that night after the appointment, my parents kept asking me to walk back and forth so they could see my abnormal walking. I was sent to a neurologist and a while later, tested positive for FA! That same year I had a spinal fusion which really knocked me off my feet. Through my incredible stubbornness, I got most of my strength back. To this day, I walk 1-2 miles daily around school with the help of my walker. I've had a few bad falls, but that only makes me more hardcore! (Like the time I fell hard on my way to a final exam and took it anyways while dripping blood from my face). I aced it, by the way!
My name is Gabrielle Angiolelli, I am 24 years old, and I live in Montreal, Canada. I live with my dad, my brother, and my service dog, Kevlar.
I was diagnosed with FA at the age of 13 and I started using a wheelchair around the age of 19 during my final semester of college. I started telling people about FA and FARA when I was in 11th grade because we held a fundraiser at school for FARA. Being a FARA ambassador is pretty cool because I love that you get to spread the word about FA and help support FARA and the FA community.
Name: 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.
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