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FARAFARA Cure FA

FARA Ambassador Program

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.

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!


 

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!

Read more: 6th Annual Century 21 King Golf Classic

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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Lauren Williams

Lauren I was diagnosed with FA around the age of nine and since then I sure have been through a lot!

FA was barely noticeable, but I remember friends asking me what was wrong? I still remember explaining what it was and that it was going to get worse to my science lab partner in 7th grade. He chuckled and said "Wow, I'd kill myself if I were you!" I tried very hard to brush it off and pretend I didn't care, as I always did when a friend would make a comment making fun of the way I walked "funny" or talked slow. My fatigue would even show and it seemed everyone made it a point to make fun of how tired I looked. 15 years later and I still remember, but I'm thankful to have let go of that anger. People around me simply did not understand my situation. I can't even say I understood it. To this day, I'm happy to call my lab partner from 7th grade a friend, whom I believe is a great person.

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Fuzzy Buzzy 2013

September 8, 2013 was our annual golf tournament in Windham, NH. For 28 years my Uncle Paul “Buzzy” Stanieich has been hosting this tournament. The first 18 years the Fuzzy Buzzy was an all guys, all day just for fun tournament. In 2004, Fuzzy Buzzy became the Fuzzy Buzzy Charity Golf Tournament with proceeds going directly to FARA.

Over the past 9 years we have raised $89,000. Our goal this year was to reach $100,000. I am happy to say, this year, the 10th year, we surpassed our goal. We raised $16,000, making our ten year total $105,000.

Read more: Fuzzy Buzzy 2013
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