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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!


 

Luke and Sandy

Name: Luke Cooper

Age: 12

Where do you call home? I live in St. Augustine, Florida with my dad, mom and three brothers, Kade 11, Brock 6, and Kolt 2.

What grade are you in? I'm in 7th grade at R. J. Murray Middle School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed at age nine in December 2011 after testing at Wolfson's Childrens Hospital in Jacksonville, Florida.

Describe your transition from walking to walker to wheelchair. I can still walk unassisted, but do use a walker at school for balance and sometimes a wheelchair. My teachers and friends at school are very helpful and supportive.

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Read more: Luke and Sandy

Ryelee and Mindy

Name: Ryelee Victoria Burris

Age: 8 years and 11 months.

Where do you call home? I live in Forney, Texas and go to school in Kaufman, Texas.

What grade are you in? 3rd grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having problems when I was 3, but was diagnosed with Guillen Barre Syndrome. My mom took me to a neuromuscular specialist in Houston, TX when I was 5. He did the genetic testing and on May 25, 2011, I was officially diagnosed with FA.

Do you have any known family history of similar symptoms to FA? No.

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Read more: Ryelee and Mindy

Alyx Holliday

Name: Alyx Holliday

Age: 18

Where do you call home? Virginia Beach, Virginia

Education: I am currently a senior at Salem High School in Virginia Beach. Class of 2015!

How long have you been living (or known you are living) with Friedreich's Ataxia? I found out I had FA when I was five. My family noticed my motor skills were not where they should be, so after a year of testing, a genetics test told me I had FA.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My family thinks my great great uncle had FA. He was in a wheelchair and had a heart condition.

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Read more: Alyx Holliday

Ride Ataxia Orlando 2014

I signed my boyfriend Tom and myself up for the 2014 Orlando Ride Ataxia. This year’s event raised over $130,000 on November 2nd (a chilly day for Floridians, indeed) for FARA, tripling last year’s total! Before this November’s ride, I had volunteered at the 2011 and 2012 Ride Ataxia Orlando, but this Ride was the first time I actually donned a helmet and pedaled for my life, literally.

On my first true ride I attempted the four-mile course. I say “attempted” because I did just that—I didn’t get a chance to finish the route for a variety of reasons, but I’m thankful for trying and failing than to have never tried in the first place. As with scientific research, it’s important to trust in the process. I will attempt more Ride Ataxia’s, and I will very likely fail to complete more courses; however, I will ride further every single time, and I will eventually finish. It’s not important to finish the race every time—it’s important to learn how to finish the race. When the race for a cure is finished, I know that the doctors affiliated with FARA will have learned to finish the race and that the cure or treatment developed will have so much fidelity due to the uncountable hours put into the pursuit, and that it will be worth the wait, just like it’s worth the struggle, pain, endurance, and sweat to learn how to finish my own race.

Read more: Ride Ataxia Orlando 2014

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.

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Read more: Hannah Barnhill
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