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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!


Concert for Christina

It was a tremendous privilege to have been present at the Concert for Christina: A Tribute to The Beatles, courtesy of New Cavern Productions at the University of the Arts on April 26th.  I attended with Debbie Foerster, a fellow member of the Friedreich’s Ataxia Program at the Children’s Hospital of Philadelphia, another devoted researcher, friend and asset to the FA community in Philadelphia and at large. As a longtime supporter of the Friedreich’s Ataxia Research Alliance and as a true Beatles admirer, I was thrilled to find both in one place, and could imagine no better, brighter way to pass a Sunday evening.

Chelsea Chamberlain

Name: Chelsea Chamberlain

Age: 31

Where do you call home? Tempe, Arizona

Education (degree(s): I have a BA in Communications from Arizona State University (ASU) and a Masters in Strategic Public Relations from George Washington University

What are your living arrangements? I live with my baby, Molly in my house I bought in 2009.  (Molly is y 6yr old, 80lb, black lab!)

What's a typical day for you? Monday – Friday, I wake up, get ready and drive to work; after work I either go to the gym, yoga, or come home. On the weekends I hang out with friends, go out, shopping, reading … just depends.  I am a Program Manager for the President’s Office at ASU, where I run two programs – I also manage the internal PR for the CEO of ASU Foundation. Needless to say, my work keeps me insanely busy – on average I work a 50hr work week … but I love it!

FARA FEST 2015

The Virginia Beach boardwalk was filled on Saturday April 18, 2015 as hundreds of people seen wearing leis, grass skirts, and even coconut bras joined together to participate in the 3rd annual FARA FEST Lei Day 5k & Flip Flop 1 mile to benefit the Friedreich’s Ataxia Research Alliance (FARA). The event has more than quadrupled in size during its three short years and has raised nearly $100,000 for FARA. There were just over 500 runners for the 5K and nearly 200 for the 1 mile. There were another hundred or more in attendance as well between volunteers and spectators. 

Natalie Denny

Name: Natalie Nadine Denny

Age: 35 years old

Where do you call home? Eskasoni First Nation, Nova Scotia, Canada

Education (degree(s)):  Bachelor of Science in Nursing.  I worked as a community health nurse for nine years in my community.  I am retired now as of two years.

What is your relationship status? Do you have children? I am married to my wonderful husband Leroy and we have a 16 year old daughter named Lenita.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed with Friedreichs Ataxia when I was 18 years old.  I specifically remember being in my high school gym class doing fitness testing.  My younger sister Angie, was my gym partner in that class.  Running...I barely kept up running with the rest of the class.  I knew I used to be very fast which was something I used to be proud of. Then there was the balance test. This was where you stand on a block on 1 foot with eyes closed.  I couldn't do it!!  I immediately suspected that I had FA and told Angie but was afraid to tell the rest of my family.  I didn't want my family, especially my parents to feel sad that another one of us has this devastating disease.  After eventually telling my parents what I had suspected and that I want to be tested, I was relieved that they supported me.  My mother suspected that I might have it also because I would bump into walls when walking down the hall to my bedroom.  I didn't realize until then that I staggered and swayed. My parents waited for me to be ready to be diagnosed, after all, there is no treatment or cure.

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