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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!


 

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.

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Michelle Huebner

 

A little bit about me...

Michelle with Cody & her Dad. Michelle with Cody & her Dad.

 

Hello! My name is Michelle. I am 35, have a fantastic 10 year old son, a loving, charming boyfriend and a very supportive family. I work about 50 hours a week for a global logistics company. I have worked for this company for 12 1/2 years and keep very busy supervising a team of 8+ people. My profession can be considered high stress but I enjoy it very much.

My son, Cody, is so special! He can light up a room with his smile and is eager to help whenever I need him. He takes care of me and I take care of him. I truly enjoy making him happy and spoiling him. He is my gift and I can be a little protective of him. Don't mess with my boy!

My boyfriend, Jason, is from Phoenix, AZ and moved to the Pacific NW 4 years ago after a quick long distance romance to start a life together. He is my Sherpa and does so much for me. Jason can be the life of the party while I am quiet and reserved. Someday we will tie the knot but neither of us are in a rush. I know that I need a strong and supportive man and I found him.

Back to me. I grew up and live in SW Washington and work in Portland, Oregon. I was very active growing up doing gymnastics and cheer leading. I started working rather young and I like keeping busy. I enjoy many things but the top of the list is traveling and being with friends and family (dog included). In the last few years I have traveled to South Africa, London, Bahamas, Miami, Phoenix and New Orleans to name a few. Next year we are planning to go to Brazil. There are so many places and cultures to see and I look forward to exploring more of the world. Michelle and Jason. Michelle and Jason.

Oh yeah, I have FA. My symptoms started when I was 20 and it took me about 13 long years to get a diagnosis. I have seen a ton of doctors (25+) and have been through a lot of tests. Receiving my diagnosis was a gift. I just wanted to know what was wrong with me. I also wanted to know what to expect in the future. I knew what FA was when I was diagnosed and took it pretty well. The hardest part is reading that your life expectancy might be around 35 years old. Did I mention I am 35? I am confident this number is bogus and I will prove it.

The other thing that took me sometime to accept is that I will be in a wheelchair some day. If you think about it, who has years to plan and think about this? Not very many people. How will the transition happen? When will it happen? Do I buy a one level house now and start making it accessible? What will be the reaction from others? And, can I get a cute, girly chair? Okay, I have accepted it now but it is a lot to grasp among all the other "fun" things that come with FA.

FA is different for everyone and that is why my diagnosis took so long. I still walk, stumble, "dance", crawl, fall and use a scooter for traveling and long distance. I love using the scooter and the freedom I have with it. FA does not define me. I am a strong woman and FA has made me even stronger. In life I choose to stay positive and to look at the bright side of things. I am enjoying my FAmily and getting involved with Ride Ataxia and FARA. This is all new to me and can be a bit overwhelming and rewarding at the same time. I look forward to getting more involved and being a part in helping find a cure.

Michelle

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