My Journey to Gratitude is Paved with Acceptance and Advocacy

I’m John Krepps and I am living with Charcot Marie Tooth disease, also known as CMT. I live in Pittsburgh Pennsylvania. (so yes, I’m a Steelers fan.) I’m married to my beautiful wife, Tracy, father to a beautiful daughter, Rhiannon, and Pap to our granddaughters Sophia and Maddie. Also, fun facts about me: My wife and I celebrated 30 years of marriage this year. I’ve gotten to meet and attend banquets with my childhood hero, Hall of Fame football player, Joe Namath of the New York Jets. I’m a huge Elvis fan, and this year I got visit Graceland, the home of Elvis.

John’s 2025 visit to Graceland.

Living with a disability is never easy, and there are some days where I just don’t want to get out of bed. And I do have days when I ask, “why me.”   But I refuse to let my disability define me. I’ve come to a point in my life where I need help with things I can no longer do. I used to feel that I was swallowing my pride when I needed and asked for help. But I now know that’s the way my life is now. And I now know that for the people who are helping me, that is their way showing me an invitation of love. I have a wonderful supportive group around me. My wife is my biggest supporter. I’m very close with my daughter who’s always there when I need her. I’m very close with my cousins and childhood friends. When one of us needs help, we tend to “circle the wagons” for each other. They’re always ready to help me. And I’m thankful for that. Some days it’s what keeps me going.

John Krepps

No two people living with Charcot Marie Tooth experience the same symptoms. Other than the obvious physical problems, it can also cause mental stress. I, myself have struggled mentally because every day is a challenge. In the last five or six years, I’ve seen my body go from pretty good shape, being able to work out and lift weights, to needing help from my wife for simple things that we take for granted every day, like tying my shoes or opening a zip lock bag. I’ve had eight surgeries on my feet that have helped with my feet deformities and my ability to walk. But this year I was fitted with my first AFO’s and I now need to use a cane when I’m walking.

2025 is my 25th anniversary of being associated with the MDA. My journey started as a volunteer, answering phones on the old annual Jerry Lewis Labor Day MDA Telethon. That evolved into various opportunities, including speaking at different events. One of the greatest things I’ve ever accomplished was being awarded volunteer of the year twice for the Western Pennsylvania District of the MDA.This presented me with a fantastic platform to advocate for MDA. A few years ago, when I was asked to be an ambassador, it was near the end of the pandemic, so there were a few slow years for being an advocate.

John speaking at the 2025 Dean Martin Festival.

Still, I decided if I was going to do this, I was going to give it everything I could. I know the value of using my voice. My future plans are a YouTube channel and eventually a podcast. I’ve been given so many great opportunities to spread awareness, because of the MDA. In June of this year, I was asked to speak at the Dean Martin celebration days in Steubenville, Ohio representing the MDA as an Ambassador because MDA was the organization that was being spotlighted to raise money for. It was the biggest audience I’ve ever spoken in front of, and It was truly an honor to be able do this.

I have accepted the realization that I have a disease that there is no cure for. I also realize I can be a voice for others living with muscular dystrophy. “Every day is a struggle living with a disability, but I believe that having a rare disease and my association with MDA gives me the greatest opportunity there is to spread awareness.” and for that I’m thankful.