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FARAFARA Cure FA

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

About the Author

The FARA Ambassador Program

The 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 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.
 
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.

 

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