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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:

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!

12th Annual Fuzzy Buzzy Golf Tournament

2015FuzzyBuzzy1Another successful year, raising $16K! For the last 12 years every second Sunday in September is the Fuzzy Buzzy Golf Tournament. I am always overwhelmed and amazed by all the support and generosity I experience. This year started in the typical fashion (aside from the rain); me being nervous and excited, and my aunts running around setting up raffles and getting ready for 12 noon registration. As golfers arrive so did some of my local friends who are also dealing with FA. We greeted the 130 players, wished them luck, reminded them why they were golfing, and saw them off for their day of golf. 

Read more: 12th Annual Fuzzy Buzzy Golf Tournament

4th Annual Slim's Journey Run and Walk

Held in Warrenton, Eastern Missouri, ”Slim’s Journey” raised $19,000 on September 12, 2015 for FARA!

SlimsJourney1Slim's Journey is held each year in September.  This year was the fourth annual event, with nearly 300 attendees this year.  The event is a 5k run / 2.5k walk, and participants could register for either event.  The 5k competitors vied for honors along gender line; top male finisher and top female finisher, along with top three finishers in specific age and gender brackets.  Along the route, information about FA was available; including a personal account of challenges faced by an individual with FA.

Slim’s Journey has raised a total of $89,000 for FARA. Next year marks the fifth year of the event, and a huge milestone for the event organizers. We hope to meet our $100,000 fundraising goal. 

Read more: 4th Annual Slim's Journey Run and Walk

Jack DeWitt

JackDeWitt1Name: Jack N. DeWitt

Age: 15

Where do you call home? Southeast Michigan (Go State!)

What is a current goal you have with your education? I’m a high school sophomore this year. I would like to attend Full Sail University for a degree in digital graphics.

What is your relationship status? Who do you live with? I am currently single (unfortunately) and live at home with my Mom, Dad and brother.

What's a typical day for you? Wake up, go to school, come home, do homework, go to bed. Wash. Rinse. Repeat.

How long have you known you are living with FA? (When and how were you diagnosed?) I’ve known I have FA for 5 years, since I was 10. Before that, I was misdiagnosed with cerebral palsy because I was a preemie but then we noticed the progression.

Are there any others with FA in your family? No. 

Read more: Jack DeWitt

Laura Beth Jacquin

LauraBethJacquinName: Laura Beth Jacquin

Age: 28

Where do you call home? Georgia

Education: I graduated from Berry College in 2009 with a Bachelor's degree in Interdisciplinary Studies concentrating in education, psychology, family studies and art. Originally, I was most interested in working with younger students. However, after student teaching in preschool, elementary and middle school, I have made the decision that I like working with older kids. Unfortunately, during my last semester before graduation, my optic nerves began degenerating and over several months time I incurred a substantial loss of vision. This prevented me from being able to teach. I'm hoping for a cure so that that I will someday be able to resume my intended career. 

Read more: Laura Beth Jacquin

FA Hangouts 9

hangouts9 2The FARA Ambassador Program presents an FA Hangout discussing pets and service animals and what they mean to us.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each is so fun! It is just an informal discussion with a theme.

This month’s hangout is open to anyone with FA and a translator if needed. We will talk about our pets and our service animals, the ones we have and the ones we want to get. They make us laugh, they make us cry, they support us, they are a lot of work… There’s definitely a lot to discuss. Bring your pet if you want (just don’t forget to mute yourself if he or she starts barking or the like) or just bring a picture. Of course we want to hear all the stories! 

Read more: FA Hangouts 9
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