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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!


 

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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Mary Nadon Scott

Mary Nadon ScottMy name is Mary Nadon Scott. I am currently 37 years old and am happily married to my wonderful and supportive husband, Kevin, and together we have 4 children. We live in Vermont, surrounded by family and friends. I was diagnosed with FA in 2002 (I was about to turn 21 years old) when I was on college at The University of Vermont. Despite many doctors discouraging me, I graduated with my bachelor's degree in nursing in 2004. I practiced nursing for 5 years, I am now able to be a stay-at-home Mom.

When I was first diagnosed I was really scared and angry. I did the whole internet search thing for information, shared and grieved with family and friends, and then stopped talking about it. I didn't want to be scared anymore, and thought that if I didn't talk about FA, then I could just deal with it "later"; it would go away. I had heard about FARA, but at the time I didn't want to be welcomed and supported, I just wanted to be left alone and be in denial. As the years went on and my symptoms progressed, I felt really alone. With a rare disease it can be hard to "find someone like you", but when you live in the small state of Vermont, it can be harder. Especially since I'd run away from FARA so many years earlier.

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Wes Gates

Wes GatesName: Robert W. Gates (Wes)

Age: 31

Where do you call home? Choctaw, OK

Education: degree Bachelor of Art in Multi-Disciplinary Studies from the University of Oklahoma

Tell us about your family: I live with my parents and have never been married.

How long have you known you are living with FA? I was diagnosed at age 13 by Walter Reed Army Hospital in Washington DC when we lived there.

Are there any others with FA in your family? No

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April FA Hangout 2019

April HangoutThis month's topic is, "The importance of FA friendships." It will be led by RJ and Allie. Come hang out!

When: Join us the April 23rd or the 24th at 8-9:30 PM. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30 pm EST each of the two days.

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.

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