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!
FARA Ambassador Program
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:
The Ambassador Blog
This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.
The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!
Gabrielle Angioelli
- Details
- Category: Ambassador
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.
Allison Dana
- Details
- Category: Ambassador
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.
FA Woodstock 2018
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- Category: Activities & Events Blog
My favorite FA event of the entire year is FA Woodstock. Now, I will admit that I am biased since FA Woodstock 2016 was my first FA event ever. Nevertheless, I am here to tell you about this phenomenal event that takes place every summer.
When you hear, "La Porte, Indiana," what do you think of? It probably isn't Woodstock, but it should be. FA Woodstock has tie-dye, camping, art, an unparalleled sense of unity and is 3 days of peace and music (the sound of rain, laughter, and wheelchairs rolling down the boardwalk). Though Jimi Hendrix does not attend and I have yet to see a Deadhead in attendance, Dr. Lynch is a spectacular substitution. And let's be honest, in the world of FA, Dr. Lynch is as cool as Jimi Hendrix. Each year, Dr. Lynch and his team attend FA Woodstock to collect blood and skin samples. (You'll have to forgive me. I have tried to be clever and find ways to compare FA Woodstock with Woodstock 1969, but for "blood and skin samples," I'm at a loss. Anyway...)
Priscilla Weatherford
- Details
- Category: Meet the Community
Name: Priscilla Weatherford
Age: 34
Where do you call home? Abaco, Bahamas
Education: High school degree and an Advanced Biblical studies certificate from Liberty University
What is your relationship status? Do you have children? No kids; live with parents.
How long have you known you are living with FA? When I was around seven years old, my thirteen-year-old sister was diagnosed with FA and that same doctor who diagnosed her suspected from my gait that I would develop FA as well. At around the age of eleven, I began losing my balance and noticing difficulties with coordination, etc. About a decade ago, my diagnosis was confirmed with DNA testing.