Celebrating Steve O’Donnell and his 2 decades of fundraising

Celebrating Steve O’Donnell and his 2 decades of fundraising – from the 2021 CMTA Report

Steve O’Donnell is a force of nature, as relentless as a hurricane and as powerful as an 8.5 earthquake. He also has a heart of gold, a soft spot for kids with CMT and a firm belief that a cure for CMT is within reach.

Whatever Steve does, he does full out, with unmatched drive and tenacity. It’s what made the CMTA’s longest serving board member a successful businessman and it’s what makes him a powerful fundraiser for the CMTA, with some $1.78 million in his column (and more coming in daily) over the last 20 years. Steve sold his steel company in 2020, but you couldn’t call him retired. Instead, he’s focusing his prodigious energies on what has become his life’s mission—finding a cure for CMT.

It all started with a swim. For many years, Steve’s yearly fundraiser was a swim across the Chesapeake Bay he called the “Swim for the Cure.” Beginning in 2002, he piggybacked his CMT fundraising event onto a swim held by another nonprofit. When they objected, he pivoted to a lesser body of water—The Tred Avon River—for an event he dubbed the Oxford FunAthlon. The event continued to morph, first online in 2020 and then to Baltimore in 2021 for a one-mile swim and a 20-mile bike ride.

Following Steve’s fundraising lead, a number of other board members have also organized major fundraising events, including the Cycle (and Walk!) 4 CMT spearheaded by Elizabeth and Chris Ouellette and Gilles Bouchard, Herb and Rachael Beron’s Team Julia swim and Phyllis Sanders’ and Alan Korowitz’s New York City Gala.

It would be hard to enumerate all of the good Steve does in the name of the CMTA, from inspiring the kids in his neighborhood to raise CMT research funds with a lemonade stand to working with physical therapist and neurologic clinical specialist Mike Studer to create a comprehensive fitness program for CMT patients of all levels and abilities. Not to mention the countless people he encourages, inspires and helps. Here are just a few:

Molly Fernandes, mother of our cover model Quinn, 3, says “We met Steve less than six months after Quinn’s diagnosis with CMT1B and our introduction to CMT. It was September 2019 at NBC4 Washington, just moments before our live interview to raise awareness of CMT and the DC Walk 4 CMT the following weekend. Steve’s passion for this cause was infectious and, for the first time, I was convinced we can find a cure for this cruel disease. Steve and Quinn became pals instantly. She even gave him a hug and kiss before parting! Over the subsequent months, it was clear that our Mighty Quinn worked her magic and inspired Steve as well. He checks in on her often and celebrates her every milestone. It’s so nice to have met such a positive role model, inspiring leader, and all-round good guy so early in our CMT journey. And Quinn is honored to be the first female and the first child to receive the ‘Man of Steel’ award.”

Steve inspires CMTA Board Member Dr. Steve Scherer “because he takes such good care of himself and cares deeply about others. He is the embodiment of how well a person can maintain his physical abilities despite having CMT. His long-standing commitment and leadership in the CMT community highlight what one person can do. Thank you, Steve.”

“Unstoppable” is the word CMTA Development Director Jeana Sweeney uses to describe O’Donnell: “Everything that Steve does, from getting up very early in the morning to go for a swim to helping others, and of course his drive to raise funds needed to cure CMT, he does with his whole heart. Steve refuses to quit, no matter the roadblock. His determination not to give in and not to give up has inspired so many, with or without CMT (me included). I feel very fortunate to have worked with Steve for so many years. However, I feel luckier to call him my friend. I do not doubt that I, my daughter Rylee, and the 3 million people living with CMT will benefit from his refusal to give in.”

CMTA Advisory Board Member Clark Semmes said, “When I was depressed following my diagnosis with CMT, a good friend told me about a guy in my neighborhood who had CMT and swam across the Chesapeake Bay every year to raise funds to find a cure. His name was Steve O’Donnell.

I decided I had to meet this guy, got his phone number, and gave him a call. He immediately invited me over to his house. Despite a serious case of CMT, Steve is a successful businessman, an amazing athlete and a devoted husband and father. Once I met Steve, I quickly decided I could no longer feel sorry for myself.”

According to camp counselor and Harrisburg branch Leader Erin Weierbach, “Steve is as dedicated to the community living with CMT as he is to the CMTA’s mission. He’s a natural relationship builder and a genuine listener, which always makes me feel comfortable to be myself around him and empowered to not let CMT stand in the way of a beautiful life. I appreciate his commitment to raising funds and awareness, but more importantly, I appreciate his positive energy and the authenticity he brings to the CMT community!”

Steve’s kids, Jaime, 27, and Sean, 25, told the CMTA Report, “For as long as we can remember, we watched our dad devote himself with unparalleled passion to the CMTA. He set his goal of finding a cure for CMT over 30 years ago and hasn’t given up since. Seeing him work tirelessly towards bettering the lives of those afflicted with CMT taught us a number of important life lessons: how to pursue something you care deeply about, how to persevere when it seems like your goal is just out of reach, and most importantly, the value of believing in something that benefits a greater good. We are so proud to see how far research and treatments have come and are excited to see a future with no CMT!”

Long-time friend of Steve (FOS) Steve O’Connell is “inspired by Steve’s dedication to the cause. Year-after-year Steve would prepare for the Chesapeake Bay swim and I was always amazed at the effort he put in. At the time I had no idea about the disease he was battling. I knew he had issues but was not aware of CMT.  Clearly, he had skin in the game. Eventually, Steve got me involved in the bay swim and later the FunAthlon. He inspired me to take the next step and sponsor a golf tournament to further support the cause. I can see in Steve a deep desire to find a cure for CMT and it makes me want to help him as much as I can.”