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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!


 

Carrie Bolinger

Carrie BolingerName Carrie Bolinger

Age 38

Where do you call home? Eastern Colorado

Education degree: I have a Bachelor's degree in Accounting.

Who do you live with? I am single and live by myself.

What's a typical day for you? I usually go swimming in the mornings at 5:30 am, and then off to work for 8 hours. After work, I usually, go hang out with friends, relax on the couch, or work part-time jobs.

How long have you known you are living with FA? I was diagnosed in July 2017 after seeing my balance declining.

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Barbie

BarbieName: Barbie

Age: 21

Where do you call home? I live in upstate NY.

Education degree(s) I plan on starting school in the fall.

Who do you live with? I am single and live by myself.

How long have you known you are living with FA? I was diagnosed in 2014.

Are there any others with FA in your family? I have a younger brother with FA.

Describe your transition from walking to walker/wheelchair. Like most people, I resisted the use of any assistive device. I currently use a walker and wheelchair.

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Gracie Boudreaux

Screen Shot 2019 08 02 at 1.51.00 PMName: Gracie Boudreaux

Age: 17

Where do you call home? South Louisiana

Education degree(s): After I graduate high school next year, I want to study mathematics.

Who do you live with? I live with my dad, my sister, my cat, and my dog.

How long have you known you are living with FA? I was diagnosed with FA at 11 years old. When I was 9 my general doctor noticed a heart murmur and I was diagnosed with Hypertrophic Cardiomyopathy. After that we noticed that I was having trouble walking so I saw a neurologist, who found my FA.

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July FA Hangout 2019

July HangoutThis month's topic is, "What fun summer activities do you have planned?" It will be led by Noelle and Antonio. Come hang out!

When: Join us on July 30th or the 31st at 8-9:30pm. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30pm EST each of the two days.

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FAmily Friend Set to Climb Mt. Kilimanjaro and Raise Money for FA

Scott OsleebScott Osleeb and his best friend Rocio Ildemaro, Team "Full Ascent," have set out to climb Mt. Kilimanjaro from September 8th - 15th, 2019. Their goal is to raise money and awareness for Friedreich's ataxia (FA) and the Friedreich's Ataxia Research Alliance (FARA) in honor of two little girls living with FA, Grace and Stella Smith. Friedreich's ataxia is a rare debilitating, life-shortening, degenerative neuro-muscular disorder. About 5,000 people in the United States and 15,000 worldwide live with FA. Grace and Stella's parents Scott and Susan are close friends of the two taking on this challenge.

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Read more: FAmily Friend Set to Climb Mt. Kilimanjaro and Raise Money for FA
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