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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


 

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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FA Woodstock 2018

FA Woodstock 3My favorite FA event of the entire year is FA Woodstock. Now, I will admit that I am biased since FA Woodstock 2016 was my first FA event ever. Nevertheless, I am here to tell you about this phenomenal event that takes place every summer.

When you hear, "La Porte, Indiana," what do you think of? It probably isn't Woodstock, but it should be. FA Woodstock has tie-dye, camping, art, an unparalleled sense of unity and is 3 days of peace and music (the sound of rain, laughter, and wheelchairs rolling down the boardwalk). Though Jimi Hendrix does not attend and I have yet to see a Deadhead in attendance, Dr. Lynch is a spectacular substitution. And let's be honest, in the world of FA, Dr. Lynch is as cool as Jimi Hendrix. Each year, Dr. Lynch and his team attend FA Woodstock to collect blood and skin samples. (You'll have to forgive me. I have tried to be clever and find ways to compare FA Woodstock with Woodstock 1969, but for "blood and skin samples," I'm at a loss. Anyway...)

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