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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


 

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.

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We Care About Rare

On September 20th and 21st, I had the honor of attending the Global Genes Patient Advocacy Summit and the Tribute to Champions of Hope gala in Newport Beach, California. Global Genes is an organization passionately dedicated to advocating, unifying and bringing much needed awareness to the rare disease community. After a close friend had a child born with a rare disease, Nicole Boice was introduced to life with a rare disease and learned first hand that rare diseases, although rare, are collectively larger than the combination of both the AIDS and cancer communities. Although rare disease as a whole affects such a large amount of people, only a very small percentage of these diseases have an organization to advocate for them and support research. Something desperately needed to be done. In 2009, Nicole Boice founded the Global Genes project with the mission to give patients/parents/families of rare disease the tools & opportunities to become advocates, network with others and bring the rare community together in support of each other, research and education. Please visit www.globalgenes.org to learn more about this wonderful organization. To hear president Nicole Boice share about her inspiration and hope for Global Genes and all rare diseases, please click here.

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6th Annual Century 21 King Golf Classic

The Friedreich’s Ataxia community has so many wonderful people working so hard towards a singular goal: treatment and a cure for FA. I always feel so blessed and thankful to attend FARA events, it’s so encouraging to be striving for a different future alongside fantastic people as dedicated as the Lamascus and Cardenas families. The Annual Century 21 King Golf Classic, held in Fontana, California on September 19th, is the result of the dedication and faithful friendship between two families.

When Josh Lamascus was diagnosed with Friedreich’s Ataxia his dad, Brian, asked his good friend, Julio Cardenas, if Julio’s annual golf classic could be dedicated to raising funds for the Friedreich’s Ataxia Research Alliance. The answer was and continues to be a very supportive YES! When I say that this tournament is rooted in faithful friendship, I am not exaggerating one bit, the bond between these families is strong and clear to all that attend the event. In the face of something as devastating as a diagnosis of FA, faith and friendship can move mountains. I am so thankful to be pushing towards the same finish line as the people behind this event, I have no doubt we will reach the triumphant end!

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Emily Penn

EmilyI was running track my freshman year of high school and developed some pain in my left knee. The orthopedic physician diagnosed me as having tendonitis. He told me to rest for a week and ice it frequently. He noticed that I had some slight scoliosis and that my walking gait was a little “off”. He referred me to Scottish Rite Hospital in Dallas, TX where they ran numerous tests, including a genetic blood test. I turned 15 years old and a few weeks later, my mother received a call from the neurologist. We set up an appointment as a family to learn what the results meant.

I remember sitting in that small, sterile office anxiously waiting for the doctor to tell me everything was going to be okay. He came in the room and sat behind his desk with a pen, a blank sheet of paper, and a folder that had my name on it. My mom, dad and I were sitting on the opposite side of the table from him watching him draw. He was explaining how Genetics 101 worked. When both parents carry a defective recessive gene, their offspring have a 25% chance of receiving both defective genes. I have two brothers, neither of which have Friedreich’s Ataxia (FA); why did I? I began to sink in my chair as he stated what my future looked like, because there is no known cure to date.

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FARA Energy Ball

The FARA Energy Ball is three days of incredible support for FA research that ultimately funds about 1/3 of FARA’s research budget for the year.

It starts on Thursday night with the FARA/USF scientific symposium to which FARA and USF invite a few of the top FA scientists from around the world to give an update on their latest research. This year the featured speakers were Dr, Mirella Dottori who gave a powerful talk about how stem cells are being used to advance FA research, Dr. Guy Miller from Edison Pharmaceuticals who spoke about the drug development process and how it relates to Edison’s progress with the EPI-743 clinical trial, Dr Helen Puccio who pre-recorded her presentation for us because she was unable to make the trip from France. Dr. Puccio introduced her research on gene therapy last year and she gave a progress update. The last part of the program is dedicated to understanding how FA affects the lives of people so there is a “patient panel” and it consisted of 4 people this year who shared their perspective on living with FA. You can view the entire symposium at FARA’s Facebook page here.

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