Page 18 - 2020 Winter CMTA Report

Youth of Tomorrow Shine

at 10th Annual STAR Gala

BY YVETTE GREEVES exceptionally well-spoken and The entire evening was filled
mature-beyond-their-years youth with laughter and tears, catching
he CMTA honored the explained what a treatment for up with old CMTA friends and
“Youth of Tomorrow” at the CMT would mean to each of meeting new ones, hearing about
10th Annual STAR Gala in them. research updates, and most im -
New York on October 29, The five honorees—Vittorio portantly, shopping to aid the
T 2019. Hosted by Phyllis Ricci, 21; Krystyn Finelli, 19; CMTA’s fundraising efforts.
Sanders and Alan and Ruth Evan Zeltsar, 14; James Mor- Dr. Steven Scherer delivered the
Korowitz at the Essex House gan,10, and my 10-year-old keynote address with an update
hotel, the evening officially began daughter Ava—shared their expe- on the promise of gene therapy
with a VIP reception where five riences living with CMT. Vittorio treatments, particularly for CMT
expressed gratitude Type 2. He also emphasized how
that he’s had the important the introduction of
CMTA as a con- biomarkers will be in speeding the
stant resource pace of discovery and treatments,
throughout his jour- as they will allow researchers to
ney while Krystin know whether certain treatments
talked about writing are feasible before launching a
poetry both as ther- full study.
apy and a way for The event raised more than
others to under- $235,000 for STAR research,
stand her struggle in much of it from a silent auction
a very personal way. that included jewelry, sporting
Many of the memorabilia, art, travel, sporting
honorees mentioned events and concerts. Even though
the transformative Ava loved the idea of a ticket and
power of Camp backstage pass to a Jonas Brothers
Footprint. Ava concert, we agreed that our
spoke about the favorite auction item was the
immediate sense of opportunity to sponsor a child
belonging she and to attend Camp Footprint.
her fellow campers It was the first time our family
Drs. John Svaren and
Steve Scherer bookend- experienced. She didn’t feel “differ- had the pleasure of attending a
ing honorees Evan ent,” as she sometimes does at CMTA Gala, and we were very
Zeltsar and Vittorio school or when playing with impressed, not only by the efforts
Ricci (rear) and Ava
Greeves and James neighborhood kids. She didn’t of the sponsors and the CMTA
Morgan (front) have to explain to anyone what but also by the inspiring words of
this strange-sounding disease our youth. They remind us time
means and why she can’t run and and again that we are family and
jump like they can. Her fellow that we are all in this journey
campers knew her before they together. On behalf of all CMT
even met and she now counts parents, we thank the CMTA for
every one of them as family. The continuing to support and con-
reception was a truly heartwarm- nect the children through Camp
Krystin Finelli, also honored at the ing event, and each of the Footprint and the launch of the
event, spoke about writing poetry honorees was presented with a Star new CMTA youth programs. By
as therapy. Her poem ”So What?” Naming Certificate to represent giving them a voice, we empower
appeared in the Winter 2018/19
issue of The CMTA Report. their bright futures. them to lead us into the future. h

18 THE CMTA REPORT WINTER 2020