FARA Ambassador Program
The 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:
Mary Bircher
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- Category: Ambassador
Mandy Davis
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- Category: Ambassador
One of my favorite quotes, “In three words I can sum up everything I've learned about life: it goes on.” by Robert Frost, is something I am reminded of, often.
I have had a typical life – I have an amazing younger sister (a great brother-in-law and the best
nephews), great parents and very supportive extended family and friends, from a small Midwestern town. I have always been an “old soul,” a quiet one who calms and listens but stands up for my beliefs, individuals and roots for the underdog. I am still typical in a lot of ways, but life happens and I like to think I am more unique than I imagined I would be.
Jacob Tompkins
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- Category: Ambassador
This Meet the Community interview was originally published in November 2014. Jacob is now a participant in the
FARA Ambassador Program.
Name: Jacob Tompkins
Age: 34
Where do you call home? Tivoli, New York
Occupation/Employment: I own and operate a recording studio in NY.
Education: Red Hook High School, Bard College.
How long have you been living (or known you are living) with Friedreich's Ataxia? I began showing symptoms at 16. All of my teachers and peers would accuse me of being drunk every day. I was diagnosed when I was 22. A few days before I left for a nation wide tour with my band.
Do you have any known family history of Friedreich's Ataxia or similar symptoms? No.
Casey Kasselder
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- Category: Ambassador
My name is Casey Kasselder; I am 25 years old and from Tri-Cities, WA. I graduated from college in June 2017 with a Criminal Justice degree, with the hopes of impacting the world one day. I have organized
numerous fundraisers including a hockey tournament in Canada. I love organizing fundraisers and the
smiles and happiness created as a result. I have this dream to organize a fundraiser in each state of the U.S., and every Providence of Canada before I am taken home. I know it sounds silly, but I want to leave
a huge impact on this world and I am sure we can all agree when I say “this world could use MORE love
and happiness.” I have a huge passion for inspirational speaking in hopes of inspiring people to follow
their dreams, live life to the fullest, and see that the negative obstacle of yesterday, is an awesome gift
for the future. I also LOVE sports like hockey, football (GO SEAHAWKS!!!), and baseball! I may not
understand every rule, but I definitely enjoy games, when on!
I’ve always been a dreamer. From the time I was a child, I’ve imagined the kind of work I would do. Work
that made a difference in the lives of people. Work that required physical strength, stamina, and
courage. I fantasized about joining the military, becoming a police officer, a social worker, anything that
would impact the lives of people in a positive way. I dreamed of being a her
Growing up life was hard. My mother had been injured in an accident and become dependent on drugs
to survive. Eventually, her dependency turned to addiction and the mother I knew and loved became a
stranger, more interested in her next fix than in mothering her children. The police were constantly
called to our home until one day my father forced her to make a choice. The drugs, or her family. She
chose drugs and disappeared from our lives. I guess one could use that as an excuse, sink into
depression, but I chose to continue to dream of making a difference. Then one day, eleven years ago, I
was forced to face an ugly, painful reality. I was sick. I had started falling, a lot. My gait was unstable, my hands were uncontrollable, until one miserable day when I fell on my face, breaking my nose and causing considerable facial breaking.
Alex Fielding
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- Category: Ambassador