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FARAFARA Cure FA

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.

Jacob Tompkins

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.

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Dave Arnold

“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch
 
My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently. 
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Christin Haun

Christin HaunI am Christin Haun from Broken Arrow, Oklahoma, part of the Tulsa metro area. I was diagnosed in 1985 as having Friedreich's Ataxia; at the age of fifteen. My current and primary job focus is maintaining my health. I have managed to keep my muscles working. I work at it, and I am blessed with an incredible familial support system and the gift of perseverance and joy. I am the only person in my family that has or had ever been diagnosed with FA. I was born an Okie and lived the first decade of my life as a nature-loving, tomboy. I am the eldest child, and bossy sister to one brother. At the age of twelve I began having issues with spine curvature, and wore a corrective back brace. Despite physician treatment, the curvature progressed. It was time for a different orthopedist. The new orthopedist recommended spinal fusion, and recognized something was amiss with my gait. He surmised a neuromuscular problem and referred me to a neurologist, who then confirmed the hypothesis. It was a very confusing, unhappy time, and the initial diagnosis was delivered as an emotionless death sentence. I had something that I couldn't pronounce that would put me in a wheelchair by the age of twenty, and by age thirty I'd be dead. Needless to say, I was traumatized, and then numb. I sought a second opinion. The diagnosis was the same; however, the second neurologist was a little more sensitive to a teenager and wanted to help me understand the disease and its process.

Initially, I was diagnosed by symptoms only. Scoliosis, irregular gait, dishing of he hands, high arches of my feet, limited muscle reflex, clear CaT Scan, slow muscle response from an EMG. Genetic testing wasn't an option thirty years ago. A genetic test in 2004 did confirm that the diagnosis was correct. Twenty five years ago, I still couldn't even speak of FA without bursting into tears. I knew no one with the disorder, and hardly anyone had ever even heard of it. I did feel alone in my fight, and as a result, didn't much speak of it. As people do, I just went on... high school graduation, college, marriage, career as a Special Ed. College was the first time I used a wheelchair - actually a mobility scooter.

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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.

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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. 
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