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FARA Ambassador ProgramThe 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.
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.
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Name: My name is Sandra Johnson!
Age: 56
Where do you call home? Scituate, Massachusetts
Education/Career: Graduated with a Bachelors Degree in Criminal Justice. I now own an Antique Consignment Shop in the town I live in.
Who’s in your family? Happily married for 30 years with two adult children, a son that is 29 and a daughter that is 26.
Name: Jeremy Cowart
Age: 43
Where do you call home? Franklin, TN
Education (degree(s): Graduated from Middle Tennessee State University with a degree in Graphic Design.
Who do you live with? My wife and four children.
Name: Corinne
Age: 35
Where do you call home? Near the beautiful city of Lucerne, Switzerland
Education (degree(s): I did an apprenticeship as a businesswoman (in the office). After I did some further education in marketing, I quit my job and started to do what makes me happy – traveling.
Who do you live with? I live alone in an apartment.
Name: Frank Van Linden
Age: 38
Where do you call home? Antwerp, Belgium
Education (degree(s): I have a degree in marketing, but it was too hard to find a job due to my disease. That's why I studied multimedia. After my studies, I only worked in Winter, because I wanted to enjoy life and not being at my desk when the weather was good outside.
Who do you live with? I live with my girlfriend, every two weeks with her children and my dog.
Name: Zach Gault
Age: 22
Where do you call home? North Carolina
Education (degree(s): I have an Associates in Arts Degree
Who do you live with? I currently live with my older brother.
What's a typical day for you? A typical day for me would be waking up and eating breakfast then showering. I watch TV, eat lunch, play Xbox sometimes and then go to the gym at night depending on how I’m feeling that day.
How long have you known you are living with FA? I was diagnosed with FA when I was 14 years old. I was diagnosed through genetic testing.
Are there any others with FA in your family? No other people in my family have FA.
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