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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: info@cureFA.org.

Casey Kasselder

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

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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

I am a native New-Englander – born, raised, and still proud to call the Ocean State (RI) my home. I’ve been afforded opportunities to travel nationally for work and internationally for pleasure, building memories with my family in places like Costa Rica, England, and South Africa. Despite my spark for adventure, I am more of a home-body; hiking/camping in the Spring, sailing in the Summer, apple picking in the Fall, and reading a good book by the fire in the Winter (as you can see I need all four seasons!). I enjoy nearly anything with family and close friends, especially cooking (and eating!), music, wrestling with our dogs and nearly anything outside. 

Lealan LaRoche Sims

Lealan, In My Words By Katie Weir I have long looked up to Lealan’s athletic prowess. On a fall afternoon in the sixth grade, our PE class convened for the annual mile run. Lealan had a reputation for being one of the fastest runners in school and that day she did not disappoint. Lealan left me, and most of the other girls (and boys), in the dust. As we moved in to junior high, Lealan was the best at softball; with her speed she could turn a single into a standup double. I was lucky enough to have her as a tennis partner during those years. On the court she was swift, confident and graceful.

Jamie Plourde

Jamie with best friend & fellow Ambassador, Tom Jamie with best friend & fellow Ambassador, Tom. Hi my name is Jamie Plourde and I live in Pembroke NH. I am 24 years old and I have a beautiful baby girl named Lily, who is now 1 year old. I was diagnosed with Friedreich's Ataxia when I was 8 years old. When I was 13, I had a spinal fusion surgery and I have been in a wheelchair ever since. Unfortunately, the hardware in my spine broke sending me back to the hospital three months later for a corrective procedure. I was really thankful when that mess was all done! Jamie with best friend & fellow Ambassador, Tom.

Erin O'Neil

 

FA is rare. One has a better chance of getting a hole in one
on a Par 3 then being diagnosed with FA.

You have the same odds of dying of a heart attack while running a marathon then being diagnosed with FA. Yet with FA being rare and affecting 1 in 50,000 I was diagnosed with FA in 1992.

 

When I was told I had Friedreich's Ataxia, I didn’t know what that was or even how to spell it and honestly I didn’t care much, I was 12. I never thought I would end up in a wheelchair. Things like that don’t happen to me. I thought the odds were in my favor.Erin I played softball, soccer and basketball up until freshman year of high school when I became so off balance and uncoordinated. Although I had to stop playing and began to manage the teams, I never gave up. I was in the drama club, class chauffeur, prom court, skipped classes, got detention and was a typical high school kid. I also walked funny but life goes on.

During my 3rd year of college things were becoming unsafe, I had to start using a wheelchair. I was falling and spraining my ankle a lot, I was feeling embarrassed at the stares from outsiders and not wanting to carry books home to study or carry my tray in the cafeteria. At this point things became clear, I could choose to sit around, waste away and feel sorry for myself, or I could just carry on. I always chose to carry on.

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