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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!


 

Carly Magnuson

Carly MHi, I'm Carly Magnuson and I live in Deerfield Beach, sunny south Florida. I was diagnosed when I was 7 and I'm 28 now. I'm a Christian. I am 1 out of 4 daughters, and the only lucky one with FA. I played T-ball, a little volleyball, swam on the Deerfield Beach Dolphins swim team, and rode horses for hippotherapy, while FA was unknown to me; I thought I had a slight balance problem until I was 11 I found out the grim truth. I had spinal fusion back surgery in 2007 and became a full-time wheelchair user shortly after that. I graduated from Deerfield Beach high school in 2009.

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Rhea Hoffman

Rhea HoffmanName – Rhea Hoffman

Age – 31

Where do you call home? Milwaukee, WI

Education – High School Diploma and a few years of college for Criminal Justice, Fire Science & Psychology.

What is your relationship status? Single, no kids. Live with my older brother & sister-in-law.

What is a typical day for you? Work full time, commute time is about 30 mins each way. We always have a lot of family gatherings during the weekends.

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Kaity Ratcliff

Kaity 2Name: Kaity Ratcliff

Age: 17

Where do you call home? Prairieville, Louisiana

What is your current goal you have with education? I plan to graduate college to become an engineer.

Who do you live with? My parents and my older sister.

What's a typical day for you? I go to school, watch YouTube, listen to music, and do homework.

How long have you known you are living with FA? I was diagnosed 2 years ago.

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Antônio Maranhão Calmon

AntonioMy name is Antônio Maranhão Calmon. I am 42 years old and currently live in the countryside, 3 hours away from Sao Paulo, Brazil.

My first symptoms appeared more strongly when I was 30 years old but my diagnosis came seven years later.

Despite the late diagnosis, I am now aware that some of the symptoms appeared in my childhood. I clearly remember a volleyball match with my friends in which I felt something different in my motor coordination.

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Jakob Mitterhauser

Screen Shot 2019 05 03 at 10.34.02 AMHey, my name is Jakob Mitterhauser. I am 26 years old and was diagnosed with FA in 2011. I live and study Urban Climate in Vienna, Austria, Europe.

I have two siblings who are both not affected by FA (not even carriers). In 2016 I first researched the disease and found FARA and Ride Ataxia. So I traveled to Philadelphia to attend the ride and the Symposium. I learned there that community and raising awareness and money for research is helping a lot to accept the disease and find a treatment/cure for FA.

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