About Madelyn

My name is Madelyn Frederick and I am currently 24 years old. When I was 13, I hit the genetic jackpot and was diagnosed with a progressive, degenerative, neuromuscular disease called Friedreich's Ataxia (FA). Say that three times fast!

11 years ago the biggest monster entered my life and I had no way of defeating it or even the capability of shrinking it. The only thing I could do, is figure out how to grow bigger than it. And that is what I did and I continue to do that everyday. Some days are definitely harder than others but I have to remember that I have FA, but it doesn’t have me, God does. It has taken me a while to accept and embrace my life now and that it doesn't happen overnight is a hard pill to swallow. FA may hinder the way that I do things but I can still do them.

I also participate in clinical drug trials and studies to do my part to try to help find a cure for Friedreich's Ataxia. I try to be as involved as possible with the FA community too. At first I thought it was scary and heartbreaking, but now being involved, I have met the most caring and loving people.

I am now lead the FA teen hangouts team and I am part of the social media team. Getting together with people who know exactly what you are going through and going through it too is the most comforting feeling and also being able to support the younger teens who are where I have been. I am also very active on social media personally too. I have learned that using social media as an outlet for me and being able to possibly help someone by sharing my journey is a blessing in my eyes. Putting myself out there was extremely hard but I am so glad I did. I am now a Make A Wish, MDA, and FARA ambassador leader, but ultimately I am an ambassador for Christ.

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Madelyn's tribe started as a team name for a fundraising event and now it's my brand. 

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I have found my purpose through my struggle and am sharing my life on social media or & spreading awareness for FA.

Stay up to date with me @madelynfrederick on instagram, facebook, and youtube!

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In life everyone has goals and dreams and when FA came into my life they disappeared. I lost all sight of everything. It was all blurry. I had dreams of becoming a mom, a wife, a traveler, and so much more. FA was a monster just obstructing my view. As I grow and get more of a clearer picture, this monster starts to become a dragon and it is still there but I am not scared anymore.       

I received a Make a Wish trip on a Mediterranean cruise and got to go to Greece which was on my bucket list and have done so many other amazing things and had wonderful opportunities placed in my path, all because of FA. Each trial and hardship I am put through or each time I am given a chance to do something, it’s just one step closer to the dragon; doing my part, I know that one day, with the help of the FA community, and everyone involved, we will slay the dragon and cure FA.