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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!


 

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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30 Years and still Fighting

Jean50, FA, still going strong.

I am fifty. I have been diagnosed with FA for about 30 years. I was diagnosed in the dark ages of FA. No FARA, no pipeline, no people riding their bikes across the country to raise awareness and money to fight FA. People ask me what I’ve done to keep myself as healthy and happy as I can. Some of what I consider to important follow. There is one big huge caveat: everyone’s FA is different. I always say I am not lucky to have FA, but I am lucky in how I have it (no heart involvement and no diabetes so far). So, in no way am I suggesting my recipe is what will work for you or your loved one. But maybe something will work for you or your loved one?

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Mary Vida

Born and raised in New Jersey, I relocated to Florida shortly after I was diagnosed with Friedreich’s Ataxia (FA). Being diagnosed over twenty years ago, it was imperative that I chose to deal with things as they come, so future expectations would not hinder me from living a meaningful life. Every person’s future is unknown to them, regardless of FA, so one day at a time is a very important life philosophy to embrace.

Life, as I knew it, began to change a few years after graduating from high school. I began questioning things going on within my body. I could no longer go down the stairs unless I was holding onto a railing, nor could I walk and converse with my friends at the same time. I was intensely focused on my walking, and it became obvious to me that other people did not have to actually focus on such tasks.

After numerous appointments & tests with different specialists, those two life changing words were added to my vocabulary: Friedreich’s Ataxia or FA for short. I was diagnosed with this inherited neuromuscular disorder at the age of 21. Being told there was no cure or any type of treatment for this condition, and that it is progressive, my emotions were all over the place, as you could imagine. I remember being tormented with images of wheelchairs, as that was not the future I had seen for myself. But, at the same time, elated that there was a real reason for what I was experiencing and I was not going crazy. I just could not believe that I had to watch my body slowly stop working without being able to do anything to prevent that from happening.

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A Milestone Ride

In the beginning of 2013, a few of my 3-wheeled ataxian cycling buddies and I decided that we needed to do a milestone ride in our recumbent trikes. I had heard of a bike ride called the Hotter than Hell Hundred from numerous people who had done it in the past. With over 14,000 riders participating every year, it makes the Hotter N’ Hell Hundred the largest sanctioned ride in the US. Participants come from virtually every state and many foreign countries for this grueling day in the sun to ride either the 100 mile, 100k, 50 mile or 25 mile route. It is held in Wichita Falls, TX, 9 days before Labor Day every year. Over 15,000 gallons of hydration fluids and ice, truckloads of fruits, pickles and cookies, and thousands of volunteers make this ride happen for the cyclists. I proposed the thought to my friends of doing the 50 mile route and we all agreed it was the perfect ride to do!

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