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FARAFARA Cure FA

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: info@cureFA.org.

The Ambassador Blog

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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!


 

FA Woodstock and Ride Ataxia Chicago 2014

imageThe 5th annual FA Woodstock was held Thursday, July 17, 2014 – Saturday, July 19, 2014. It is a three day event hosted by the Hook Family at The Flying H Ranch in La Porte, Indiana who graciously open their home up for people affected by Friedreich’s Ataxia (FA) and their families to enjoy a variety of activities. The 21 acre ranch is home to lots of livestock including cows, horses, a mini horse, bunnies, a goat, a pig, mini donkeys, dogs, a bird and probably a few more species unmentioned. The Friedreich’s Ataxia Research Alliance (FARA) and The Children’s Medical Center of Philadelphia (CHOP) staff came out to the event to conduct medical research that would usually take half a year to collect.  

Read more: FA Woodstock and Ride Ataxia Chicago 2014

Spotlight on Kiela Acker-Williams

Strength & Determination

Kiela Acker-Williams has been living with Friedreich’s Ataxia (FA) for more than half of her life but despite all the challenges FA brings, she remains strong and more determined with each passing year to continue fighting for a cure. Kiela was diagnosed with FA at the age of ten but symptoms began becoming apparent six years earlier. She recalls being clumsy and off-balance and always falling down. When Kiela was just seven years old she had a muscle biopsy which led to visits all over Northern California’s Bay Area in search of answers to explain her unusual gait and increasingly frequent falls. A year later she received a diagnosis of ataxia but it was not determined to be Friedreich’s Ataxia for two more years.

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Read more: Spotlight on Kiela Acker-Williams

Pam Shortt

Meet Pam!Name: Pam Shortt

Age: 35

Where do you call home? Ontario, Canada

Relationship status? Do you have children? Married for 13 years and counting. We have one nine year old son.

Occupation/Employment: I stopped working 10 years ago. Now I am a stay at home wife & mom which is busy, busy, busy!

Education: I graduated in 2000 with honors as a Registered Nurse.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having balance and gait issues around 15 years old. Certainly made high school more interesting! It was obvious that there was something not quite right but doctors put it down to me being a klutz. At 19, in nursing school, we were studying the nervous system and practicing performing neurological exams. I failed! I went to a neurologist and he knew it was Friedreich's Ataxia. I was sent for countless tests & finally diagnosed via genetic testing.

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Read more: Pam Shortt

Abby Yingling

Meet AbbyName: Abby Yingling

Age: 19

Where do you call home? I live in a small suburb of Harrisburg, Pennsylvania.

Education: In the fall, I will be returning to York College of Pennsylvania as a sophomore undeclared student. I am exploring my options of being a Recreation and Leisure major with a therapeutic concentration. I want to have a career where I can work with people who have physical disabilities!

Occupation/Employment: Along with being a student, I have a work study position as a desk attendant, as well as a summer job at Michael’s Arts & Crafts as a cashier.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was nine years old, my mom noticed that my left foot was turning in when I walked. I was sent to a neurologist who diagnosed me with Charcot Marie Tooth. It wasn’t until I was thirteen that I was sent to a cardiologist, due to experiencing dizziness, that he suspected something different was going on. Meanwhile, my youngest brother began showing similar characteristics. Finally, when I was 16, both my neurologist and cardiologist sent us to Dr. Lynch. After genetic testing it was confirmed that my brother Chase and I have FA.

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Read more: Abby Yingling
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