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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: 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!


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. 

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 other...it 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! 

Evan Luebbe

EvanLuebbe1Name: Evan Luebbe

Age: 19

Where do you call home? Cincinnati, OH

What is a current goal you have with your education? I graduated from Lakota High School in May of 2015. I’m now attending Miami University (OH) and majoring in Forensic Criminal Justice with a minor in Psychology.

Who do you live with? I live with each of my parents and brother, Graham.

What's a typical day for you? I go to school on Monday and Wednesday and have an aide with me for 4-5 hours on the days when I don’t have school. I go to the gym 2 times per week to lift weights and I also have exercises I do at home every day. It’s important to me that I stay strong. I can still walk very short distances with my Dashaway walker, so I try to walk as much as possible.

Ambassador Review: Pipeline Progress and Clinical Trials

Advocate Reaction: Thinking Out Loud

My favorite way to start a day is with a fresh coffee (iced of course) and a good article to read. I’m always excited when a new issue of The Advocate comes out from FARA – it’s a welcome change from the depressing, doomsday articles I always find in the newspapers. Per usual, the Summer 2015 issue did not disappoint, and I was rejuvenated reading Executive Director Jennifer Farmer’s article summarizing the research pipeline.

I didn’t realize FARA is funding 16 of 19 candidates on the list and advocating policy to advance research and drug development – that’s the definition of fundraising ROI! Jen’s article went on to summarize the active trials, with descriptions of what the study entails and links directly to the flyers. Did you know there are currently 3 active drug trials for FA and they each have a unique treatment approach? That’s a diversified portfolio! (OK, I promise I’m done with the finance references!) 

Bridget Downing

BridgetDowning1Name: Bridget downing

Age: 29

Where do you call home? Charleston, South Carolina

Education (degree(s)): I have a bachelor's degree in elementary education from Elon University and a master's degree in science and math for teachers from the College of Charleston.

What is your relationship status? Who do you live with? I am single and live alone.

What's a typical day for you? I teach kindergarten, so my alarm goes off at 4:45 and is very busy as you can imagine! The school day ends at 2:25, but I always have work to do after school. I try to leave at a reasonable time most days (between 4 an 5) so I can go to physical therapy, work out on my own, or go to happy hour. 

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