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FARAFARA Cure FA

FARA Ambassador Program

The 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.

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.

Read more: Antônio Maranhão Calmon

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.

Read more: Jakob Mitterhauser

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.

Read more: Mary Nadon Scott

Tricia Herman-Maul

TriciaMy journey with Friedreich's Ataxia started 20 years ago. It was 1997 when my sister was diagnosed with FA, there was little information available and no hope for a treatment or cure. After much research, I knew I also had symptoms of FA but waited until 2008 (age 28) to get the DNA test done. After waiting 3 months the results were positive. Some of my first symptoms in high school were bad coordination, weak ankles, and foot pain. At age 32 scoliosis appeared and I began relying on handrails on stairways. My late on-set and slow progression have led to using a rollator and holding onto someone's arm to get around at age 36.

Read more: Tricia Herman-Maul

Dillon Head

Dillon HeadHi Everyone, my name is Dillon Head, I'm openly gay and proud. I have been a FARA Ambassador for the past three years, I'm 23 years old and live with my family in Upstate New York; which I have lived my whole life.

I was diagnosed with Friedreich's Ataxia when I was 17. I was 16 when my family and I started noticing symptoms of something that wasn't right. It took us over a year of seeing multiple doctors to get possible answers. I finally went to an amazing doctor at Strong Memorial Hospital in Rochester, NY. He ordered a genetic blood test which he sent to Baylor University to have them run the test.

Read more: Dillon Head
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