Page 5 - 2021 Summer CMTA Report

teve O’Donnell is a less than six months after Quinn’s
force of nature, as diagnosis with CMT1B and our intro-
relentless as a hurricane duction to CMT. It was September 2019
at NBC4 Washington, just moments be-
and as powerful as an fore our live interview to raise aware-
8.5 earthquake. He also has ness of CMT and the DC Walk 4 CMT
a heart of gold, a soft spot the following weekend. Steve’s passion
for kids with CMT and a firm for this cause was infectious and, for
the first time, I was convinced we can
belief that a cure for CMT is find a cure for this cruel disease. Steve
within reach. and Quinn became pals instantly. She
even gave him a hug and kiss before
Whatever Steve does, he does full out, parting! Over the subsequent months,
with unmatched drive and tenacity. it was clear that our Mighty Quinn
It’s what made the CMTA’s longest- worked her magic and inspired Steve
serving board member a successful as well. He checks in on her often and
businessman and it’s what makes him a celebrates her every milestone. It’s so
powerful fundraiser for the CMTA, with nice to have met such a positive role
some $1.78 million in his column (and model, inspiring leader, and all-round
more coming in daily) over the last 20 good guy so early in our CMT journey.
years. Steve sold his steel company in And Quinn is honored to be the first
2020, but you couldn’t call him retired. female and the first child to receive the
Instead, he’s focusing his prodigious ‘Man of Steel’ award.”
energies on what has become his life’s
mission—finding a cure for CMT. Steve inspires CMTA Board Member
It all started with a swim. For many Dr. Steve Scherer “because he takes
such good care of himself and cares
years, Steve’s yearly fundraiser was a deeply about others. He is the embodi-
swim across the Chesapeake Bay he ment of how well a person can main-
called the “Swim for the Cure.” Begin- tain his physical abilities despite having
ning in 2002, he piggybacked his CMT CMT. His long-standing commitment Steve O’Donnell emerges from
fundraising event onto a swim held by and leadership in the CMT communi- the Chesapeake Bay after his
another nonprofit. When they objected, ty highlight what one person can do. July 2002 fundraising swim.
he pivoted to a lesser body of water— Thank you, Steve.”
The Tred Avon River—for an event he
dubbed the Oxford FunAthlon. The “Unstoppable” is the word CMTA
event continued to morph, first online in Development Director Jeana Sweeney “Steve is known for his
2020 and then to Baltimore in 2021 for a uses to describe O’Donnell: “Every- boundless energy, his fierce
one-mile swim and a 20-mile bike ride. thing that Steve does, from getting up competitiveness and his
very early in the morning to go for a ability to inspire others. But
Following Steve’s fundraising lead, swim to helping others, and of course
a number of other board members his drive to raise funds needed to cure what has touched me so
have also organized major fundraising CMT, he does with his whole heart. many times is that he also
events, including the Cycle (and Walk!) Steve refuses to quit, no matter the has such a BIG HEART. It’s
4 CMT spearheaded by Elizabeth and roadblock. His determination not to this unique combination
Chris Ouellette and Gilles Bouchard, give in and not to give up has inspired that has made Steve such a
Herb and Rachael Beron’s Team Julia so many, with or without CMT (me valuable member of our team
swim and Phyllis Sanders’ and Alan included). I feel very fortunate to have for so many years, fueled his
Korowitz’s New York City Gala. worked with Steve for so many years. countless contributions for
It would be hard to enumerate all of However, I feel luckier to call him my those affected by CMT and
the good Steve does in the name of friend. I do not doubt that I, my daugh- makes him such a fun and
the CMTA, from inspiring the kids in his ter Rylee, and the 3 million people interesting person to work
neighborhood to raise CMT research living with CMT will benefit from his with.”
funds with a lemonade stand to work- refusal to give in.”
ing with physical therapist and neuro- CMTA Advisory Board Member Clark — Gilles Bouchard,
logic clinical specialist Mike Studer to Semmes said, “When I was depressed chair of the CMTA
create a comprehensive fitness pro- following my diagnosis with CMT, a Board of Directors
gram for CMT patients of all levels and
(AND HIS 2 DECADES abilities. Not to mention the countless good friend told me about a guy in
my neighborhood who had CMT and
people he encourages, inspires and
swam across the Chesapeake Bay
OF FUNDRAISING) helps. Here are just a few: every year to raise funds to find a cure.
Molly Fernandes, mother of our cover
His name was Steve O’Donnell.
model Quinn, 3, says “We met Steve
continued on page 6
SUMMER 2021 THE CMTA REPORT 5