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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!


 

Patient Perspective: Jean Walsh's Decision to Participate in TAK-831

TAK studyI like to participate in clinical trials. Sometimes it seems like a small thing to do, but I know it is a big thing. FA is a rare disease. Because there are so few of us (about 5,000 in the US and 15,000 worldwide), those of us with FA who are eligible for clinical trials need to step up and populate them. As we do, the researchers and the companies behind them can help us reach a time when no one has to hear: "FA, no cure, no treatment, plan for a short life." If we don't become research subjects, a cure will never be found.

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Read more: Patient Perspective: Jean Walsh's Decision to Participate in TAK-831

Michael Pelletier

Michael mtcName: Michael S Pelletier

Age: 57

Where do you call home? New Haven, CT

Education: GED

What is your relationship status? I am Divorced. I was married for 15 years and have 3 children. I currently have a girlfriend. I live alone. Help comes for me in the morning.

What's a typical day for you? I wake up around 11:00-12:00. Then I eat breakfast and exercise with weights. Help comes and cleans the house and I go for a walk. I am looking for a new apartment. I am usually up until 1:20 am.

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August FA Hangout 2018

FA CribsThe August hang out will be led by Jake Tompkins. The topic will be "Cribs-FA edition." This is supposed to be our lighthearted take on the classic MTV show. Show us your space, whether through still photos or with your webcam you can share your space.

At FA Hangouts we laugh, we connect, we hang out, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

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Johnna Wheeler

JohnnaName: Johnna Wheeler

Age: 30

Where do you call home? New Orleans

Education: I have my high school diploma, and I'm working towards going to college for Physics and Astronomy.

What is your relationship status? Do you have children? Single and happy! No kids, but I have 4 nephews that I love like my own!

How long have you known you are living with FA? I was diagnosed when I was 7. My teacher at the time noticed that I had balance issues, and suggested that my parents take me to see a neurologist.

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Gabe Ford

GabeName: Gabrielle "Gabe" Ford

Age: I am 38 years wise

Where do you call home? I currently call Canandaigua, NY home but that can change. I'm originally from Michigan for most of my life so far. I lived in Florida for 4 years and Indiana for 5 months.

Education: I graduated from high school and went to a travel academy to become a travel agent. I am a certified travel agent but chose not to work in the public due to my condition and fears of the public eye. Now being more mature and wiser compared to back then, I'm not as concerned with the opinions of the public eye. Life with FA has been the best teacher!

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