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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!


Manoj Dahal

Name: Manoj Dahal

Age: 36

Where do you call home? Changunarayan, Bhaktapur, Nepal

Education (degree(s): Masters in Business Studies from Tribhuwan University, Katmandu Nepal. Completed in 2007 but being FA, I am without job. Here in Nepal, nobody wishes to take me as an employee because of my physical condition as we do not have any accessible environment for disabilities.

Who do you live with? I am single, living with my parents.

What's a typical day for you? I am staying at home making entire world within four corners of my room.

How long have you known you are living with FA? (When and how were you diagnosed?) Since 1995, I have been FA. When I visited the doctor at Bir hospital in Kathmandu by checking my symptoms, he diagnosed me as FA. I had got my MRI also.

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

Describe your transition from walking to walker/wheelchair. From 1995,I walked with support of my friends. When I used to walk on my own, other people used to call me a drunkard. After 2010, I stay most of the time in my home. Once or twice in a month when I go out to visit or for special purpose, two of my friends catch me to support walking because we have no good accessible wheelchair in our place. That's why I have to make four corners of my room as entire world.

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. 

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