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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.

Shandra Trantham

Shandra TranthamHi! 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!

Read more: Shandra Trantham

Gabrielle Angioelli

Gabriel AMy 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.

Read more: Gabrielle Angioelli

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.

Read more: Allison Dana

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.

Read more: Ashlea Smith

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

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