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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!


 

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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Priscilla Weatherford

Priscilla 5Name: Priscilla Weatherford

Age: 34

Where do you call home? Abaco, Bahamas

Education: High school degree and an Advanced Biblical studies certificate from Liberty University

What is your relationship status? Do you have children? No kids; live with parents.

How long have you known you are living with FA? When I was around seven years old, my thirteen-year-old sister was diagnosed with FA and that same doctor who diagnosed her suspected from my gait that I would develop FA as well. At around the age of eleven, I began losing my balance and noticing difficulties with coordination, etc. About a decade ago, my diagnosis was confirmed with DNA testing.

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Young Adult Representatives of RDLA Event

Yarr 3On Saturday, July 14, 2018, I went to Newport Beach to attend the Young Adult Representatives of Rare Disease Legislative Advocates (RDLA) event, who are a group ranging from 13-25 years old in the rare disease community. They call themselves YARR for short.  The event was about an hour and a half drive from my house. I'm 25, so I just made the cut.

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The Walker Family

Kate 2Name: Kate Walker

Age: 15

Where do you call home? North Louisiana

Education: 10th grade

Who do you live with? I live with my parents, Rachel and Jason, and my dog, Ellie Mae.

What's a typical day for you? Since it is summer right now, my routine is different than it would be during the school year. I usually wake up around 9 or earlier and lay in bed for a while. I work on my website or my YouTube videos during the day. I try to find time to do some sort of exercises. Some days I spend time with friends, ride my trike, or watch TV. It depends on how tired I am that day. There are days I don't get out of bed much, but I try to keep myself motivated. 

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