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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!


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.

Read more: July FA Hangout 2019

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.

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

The Swaney's

Swaney KidsName Dawson Ryker Swaney

Age 15

Where do you call home? Pendleton SC, "where the blue ridge mountains yawn its greatness and the tigers play." I live in one town over from Clemson University, National Football Champions.

Education: 10th grade

Who do you live with? I live with my parents, sister and my 3 lizards (Taz, bearded dragon, Flash, a leopard gecko, and Speck, veiled Chameleon). I also have my service dog, Otis, my sister's service dog, Piper and our family miniature poodle, Bear.

What is a typical day for you? A typical day is high school followed by Crossfit.

Read more: The Swaney's

Damaris Eunice Seballes

Screen Shot 2019 07 19 at 2.33.59 PMName: Damaris Eunice Seballes

Age: 21

Where do you call home? Texas

Education degree(s): High School Diploma & some college

Who do you live with? I am currently in a relationship, which we are taking serious. I do not have children nor do I really want any. DON'T GET ME WRONG, I adore kids, but I don't exactly see being a mom in my future. As of now, I live with my mother and siblings. Although, hopefully in the near future I'll be able to decorate my own house.

Read more: Damaris Eunice Seballes

Susan Allen Carter

Susan Carter Profile PicName: Susan Allen Carter

Age: 45

Where do you call home? Northeast Louisiana

Education [degree(s)]: I currently have a Bachelor's degree in Social Work and Master's in Education. I also have a degree in Community Counseling. ALL people have struggles and ALL people have things for which to be thankful. In essence, that is my job as a counselor.

Who do you live with? I'm recently divorced. I live with my 15-year-old daughter and two cats.

Read more: Susan Allen Carter
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