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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!


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. 

Funny 4 Funds Comedy Night

Funny4Funds1Have you ever heard the one about the deaf guy cleaning an apartment for the blind guy? I promise you, the real story is funnier than what you might be imagining!

We laughed over this and many other comical scenarios thanks to a stand-up comedy show put on by Funny 4 Funds; the group hosts comedy events as a fundraising platform for local causes. On July 31st, nearly 200 people packed the VFW in Cranston, RI to enjoy some entertainment while raising funds and awareness for FARA. With a silent auction raffle, T-shirt sales, and ticket proceeds, the night raised $6,000 for FARA – nothing funny about that, just a great success for the hard-working team! It was exciting to see a packed house supporting FARA and great that everyone left with a smile, clutching their sides. 

2015 FA Adventure Day

2015FAA1This year it was my honor to again host the FA Adventure Days. Every year as the day grows nearer and the intensity of the organization I need to do to make it happen increases, I wonder why I committed myself to it and/or whether or not I overcommitted myself again. This felt especially true this year.

But guess what? Just like every other year, the day happens and I know exactly why I did it. People traveled a good six or seven hours and stayed in hotels just to spend the day with us. Our FAmily is amazing! One day my dad hit it right on the head. He said: “it is a community you never want to be part of (because it means you or someone you love has FA), but it is an amazing community.” 

Brian Bianchi

Name: Brian Bianchi
 
Age: 21
 
Where do you call home? Newington, Connecticut. My parents are moving to South Carolina (Charleston area) in about two months, so that will probably become my new home.
 
Education: I am a senior at the University of Hartford (GO HAWKS!). I am majoring in Computer Science and double minoring in Mathematics and Multimedia Web Design. I am very passionate about technology and love to create things and solve problems.
 

Asad Rafi

Name: Asad Rafi
 
Age: 45
 
Where do you call home? Karachi, Pakistan
 
Education (degree(s): I could not pursue with my higher studies after I was diagnosed with FA at the age of 17. I was very much interested in learning computers and joined IBM Pakistan where I worked for 15 years. I love to write and my articles have been published in various papers and magazines including articles on FA. I have recently written my first book titled “Steel Wheels”. 

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