Page 3 - Fall 2020 CMTA Report

A M E S S A G E F R O M T H E C E O

DEAR FRIENDS,

o quote Freddie Mercury of the band Queen, “We are the champions.”
TDuring Awareness Month in September, we came together as a com -
munity to champion our cause—an end to CMT. We also recognized and
celebrated our “champions with CMT”—the people in our lives who inspire
us with their courage, strength and heart in facing the daily challenges
of living with the disease. From spreading CMT education to health care
professionals to decorating AFOs, community members took every
opportunity to engage in fun and empowering Awareness Month
activities to help make CMT known and understood around the world.
Our crack researchers are also champions and they have been hard at work on a wide array
of studies, screens, trials and tests. In addition to a CMT1A research roundup in this issue, you’ll
read about a new partnership with Pharnext and $360,000 in new research recently funded by the
CMTA Board of Directors.
We’d also like to make sure you’re “aware” of the efforts of our dedicated Board of Directors,
who have stepped up this year as never before. Some board members swam for CMT. Herb Beron
and Team Julia held a virtual swim this year, raising $71,000 for a total of more than $1 million
in the last 14 years. Steve O’Donnell also went virtual for his Sixth Annual Funathlon in June,
swimming with his son across the Tred Avon River, then biking 20 miles to raise more than
$80,000, for a lifetime total of more than $1 million. Steve also held a golf tournament to benefit
the CMTA in September, raising an estimated $120,000. Some board members biked and walked
for CMT. Chris and Elizabeth Ouellette organized the virtual Seventh Annual Vermont Cycle (and
Walk!) 4 CMT, which raised over $200,000, for a seven-year total of more than $1.2 million.
Event founder Chris also rode 300 miles in three days for the 3 million people worldwide who
have CMT. Board Chair Gilles Bouchard and Thomas Dubensky biked across the Golden Gate
Bridge in support of the virtual event.

Some board members held virtual fundraisers: New board member Dave Coldiron and his
family held a first-year fundraiser that brought in $32,151 and in New York, Alan Korowitz and
Phyllis Sanders pivoted from their usual New York City gala to raise money through a friends and
family fundraising campaign. Other board members pledged their own funds. New board member
Dan Chamby and his family pledged $1 million, including a $200,000 match for Awareness
Month. Kevin Sami, Tom Dubensky, Gary Gasper, Laura Fava and David Norcom all made personal
commitments to support our mission through their generous donations this year.

Last but not least, the trio of doctors on our board—Drs. Michael Shy, John Svaren and Steven
Scherer—spearheaded our STAR research strategy to ensure we are investing our funds in the most
promising efforts for our community. As CMTActive moderator Benjy Hershorn put it in a Facebook
post, “[T]he ongoing and consistent commitment (year after year) of people like Steve … and
including so many others doing the ‘BIG STUFF’ inspires and motivates me to do my small part.”
Thanks to all for doing their parts, big and small.
All my best,

AMY GRAY, Chief Executive Officer

FALL 2020 THE CMTA REPORT 3