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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!


Hannah Barnhill

Meet HannahName: Hannah Barnhill

Age: 19

Where do you call home? Eastern North Carolina

Education: I am currently studying Sociology at East Carolina University (GO PIRATES!) and am on track to declare my major officially in the spring. I want to work with kids who also have muscle diseases to motivate and encourage them that this is not where it ends!

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was growing up, I was always very clumsy. Doctors insisted that it was because I grew so fast that I hadn’t “grown into my legs”. However, when I was 17 and 5’9, I had still not “grown into my legs,” so my doctor recommended that I be seen by a neurologist for further testing. After several MRI’s and genetic testing, I was officially diagnosed with Friedreich’s Ataxia.

Ride Ataxia Philadelphia and CHOP Medical Symposium 2014

philly141Learning from Philadelphia: What We Can Do As The Patient

Ride Ataxia Philly on Sunday, October 12th and the 7th Annual Friedreich’s Ataxia Symposium hosted by Children’s Hospital of Philadelphia (CHOP) the following day on Monday, October 14, 2014 was a positive and inspirational time for the FA Community. As the cyclists anxiously lined up to ride 5, 10, 25 or 50 miles on a beautiful Sunday morning, all were encouraged with the knowledge that every pedal made is a step closer to a cure. Ride Ataxia Philly hosted its 6th annual event this year in Blue Bell, PA with great sponsors such as Bonefish Grill, Carrabba’s Italian Grill and Outback Steakhouse. There were 475 riders and $215,000 was raised for awareness and FA research!

Spotlight on Gunnhild (Andreassen) Lystad

A Norwegian Physiotherapist with FA

“I want my body to be in its best possible condition to fight FA all the way!”

 

Who: This beautiful, cat-loving, 36-year-old has a strong and supportive family, which includes a dashing Scandinavian husband, parents, two sisters and a brother; one sister is also diagnosed with FA.

What: Gunnhild graduated with a degree in physiotherapy from Luleå University of Technology. Her education helped begin an understanding of her diagnosis with ways to combat symptoms of FA through exercise. Along the way, she discovered this was a perfect opportunity to reach out to the FA community and share what works and what doesn’t work for her by writing a blog.

Brooke Ziegler

imageName: Brooke Ziegler

Age: 26

Where do you call home? Wichita, Kansas

Relationship status? Do you have children? In a relationship.

Occupation/Employment: Stay at home dogmom/girlfriend, hehe. But really I seasonally work for a local business, I volunteer a lot and I am a consultant for Scentsy fragrance and Velata fondue.

Education: Bachelors of Arts in Strategic Communication Alma Mater: Wichita State University

Drake and Trisha

Name: Drake (aka bub)

Age: 8 years old

Where do you call home? Ohio

Do you have any brothers or sisters? I have a sister named Zoe.

What grade are you in? I am in the second grade.

What do you like to do in your free time? Play outside, play DS and play Xbox.

How long have you been living (or known you are living) w/fa? (When and how were you diagnosed?) I was six when I found out. They gave me a blood test that hurt.

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