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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.

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.

Read more: Lealan LaRoche Sims

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.

Read more: Jamie Plourde

Lake Denk

Hey everyone, my name is Lake. I am 38 years old. I live in San Antonio (for now, I like to move around). I do call Kansas City my home since I was there for most of my life. I was diagnosed with Friedreich's Ataxia 16 years ago. It all started when I was in college and I wanted to ride my bike on some of the dirt trails. It’s hard to describe the feeling to others without FA (but you know what I’m talking about) of knowing in your mind how to do something, but your body is saying no. Shortly after that I went to a neurologist who ran a gamut of tests; MRI, CAT scan, blood work, EMG (my personal favorite) and a spinal tap.

LakeNothing. Nada. As far as he could tell by the results I was healthy, but from what he was seeing and hearing from me, he wanted a second opinion. He sent me to another neurologist, from one look at how I walked and what I described; he had me do a new DNA test that had just come out. I was tested for Charcot-Marie-Tooth disease (CMT) and Friedreich’s Ataxia (FA). The result came back that I, unfortunately, had FA. My first question was “How do I get rid of it?” The answer from the neurologist, currently there is no treatment or cure, was clearly something I didn’t understand.

Read more: Lake Denk

Stephanie Magness

It’s probably pretty obvious that my life has not completely turned out how I hoped and dreamed it would, but really, who can say their life has traveled this journey exactly how they thought it should?

Before 1994 there wasn’t any indication that my life wasn’t going to read like the most perfect fairy-tale ever. Why shouldn’t it have? I had a great childhood filled with a wonderful family and good friends. Of course hindsight is always 20/20, and there were small, subtle signs pointing to a different kind of life. But nothing to make me, or anyone else, think the fairy-tale ending might crash and burn with a scoliosis diagnosis during a P.E. screening in 7th grade. That’s how it all started, a routine exam in the gym locker room a few months before my thirteenth birthday suddenly morphed into a day I will never forget. Next stop was my pediatrician who pointed out what my parents had already begun to fear…there was something a lot more serious going on to cause my spine to twist into an “S” so quickly that no one had noticed it. The word “neurologic” must have been spoken in that room because a few trips to a couple different neurologists came next.

Read more: Stephanie Magness

Tom Trovinger

Hi, my name is Tom, I'm 38 years old, and I was diagnosed with FA in 1997. I live independently in my own house, which is very important to me. I strive to do whatever I can to maintain some level of independence for as long as possible. Living alone at times can be very difficult.Tom I find myself getting frustrated more easily because I routinely find different things that I either cannot do, or have more and more difficulty doing. It's almost as if I am continuously mourning the loss of different abilities. My constant struggle to maintain my independence can also be very difficult to friends and family members. I am very resistant to ask for, or accept, help. A lot of people around me get upset with me because they want to help, rather than watching me struggle with an otherwise easy task.

Staying active, to me, is a very important part of being able to stay independent. Staying active, doesn't necessarily have to involve exercise, but I think that is a huge part of it. I subscribe to the "If you don't use it you will lose it" rule, meaning if you have muscles that you don't use on a regular basis, they will gradually deteriorate, and eventually you won't have them to use. I work out at the gym four days a week, doing whatever I can. I also participate in physical therapy twice a week where I exercise my core muscles and walk, albeit for short distances. I also travel a lot, and participate in many social activities.

Read more: Tom Trovinger
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