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Larchmont Triathletes Raise $370K+ For Barth Syndrome

Four local Larchmont Triathletes, competing as Team Will in honor of a local young man affected by a rare disorder called Barth Syndrome, finished the Arizona Ironman Triathlon on November 21, and raised over $370,000 for the Barth Syndrome Foundation (BSF).  Team Will won an additional $10,00 for BSF by winning the Janus Charity Challenge – a contest sponsored by the Janus Funds to encourage athletes to use the Ironman events to raise money for their favorite charity.

Gary Rodbell

Gary Rodbell

Gary Rodbell (team captain, coach and five time Ironman) and Matt Karp (owner/chef of Plates Restaurant in Larchmont and three time Ironman), teamed with first time Ironmen Heather Segal, Paul Epstein and Ghent Lummis of Houston, Texas to complete the grueling race. They swam 2.4 miles, biked 112 miles and ran a full 26.2 mile marathon.

Mr. Rodbell formed Team Will several years ago to help raise money for the Barth Syndrome Foundation in honor of his 24-year-old friend Will McCurdy, who has endured the disorder from birth.  Mr. Rodbell and the 17-member Team Will are regular competitors in the Jarden Westchester Sprint Triathlon held in Rye every September.  Encouraged by their success in marathons and the shorter triathlons, Mr. Karp, Ms. Segal, Mr. Eptstein and Will’s cousin Ghent Lummis in Houston signed up a year ago for the Arizona Ironman.

The team immediately began training under Mr. Rodbell’s watchful eye. But “nothing can fully prepare you for the Ironman!” noted Mr. Epstein.

The first leg of the race entailed donning a wetsuit and diving into 62 degree water as the dawn broke at 7 am.  It’s a crowded 2.4 mile course with 2,500 other frenzied swimmers kicking you in the face and swimming over you. Mr. Rodbell Gary describes it as swimming in a washing machine while people throw lawn furniture at you.  As swimmers emerged in various states of hypothermia, the first of Team Will’s competitors to appear was Paul Epstein just before 8:30am. 

Matt Karp

Matt Karp

Paul Epstein

Paul Epstein

Next is the bike — three loops from the city out into the desert to an Indian reservation and back.  This leg takes a long time and lasts through the heat of the day.  The bikers have to stay hydrated and fed and hope not to get a flat tire too far from an aid station.  Matt Karp had the fastest bike time, finishing 112 miles in just over 6 hours, almost a full hour in front of Ghent Lummis, the next member of Team Will to finish the second leg.  

Heather Segal

Heather Segal

Ghent

Ghent Lummis

Last comes the marathon — that long, long run that takes you out of the city again and extends into the dark and the cold.  It is lonely and tough and you really have to dig deep to keep going. 

Heather Segal was the fastest member of the team on this leg, with a highly respectable time of 4 hours and 48 minutes.  Still, she was unable to catch up to Matt who finished first for Team Will in 13 hours and 48 minutes for the full race. 

Family and friends of Team Will, including Will and the rest of the McCurdy family, were at the finish line as each competitor ran the final 100 yards through the incredibly loud, cheering crowd and the announcer declared, “Matt, Heather, Ghent, Gary, Paul, YOU are an Ironman!”

Throughout the race, members of the Barth Syndrome community from all around the world were tracking the progress of their athletes on-line and sending notes of encouragement to them through the McCurdys. 

The mother of a boy with Barth from Knoxville, Tennesse wrote: “I am in awe at Gary, Matt, Heather, Paul & Ghent’s dedication to our cause.  I can only imagine the strength & courage it must take to prepare for this event, let alone be able to complete it.  Please tell our Ironmen that we are cheering for “Team Will” and that we are so proud to have them represent the Barth Syndrome Foundation and each and every one of our Barth boys… [and] help raise awareness & funds for BSF!  What they are doing … is such a wonderful gift they are graciously giving our boys!  Please tell them that no matter what rank they finish they will always be our #1 Ironmen & Ironwoman!  We are so proud and blessed to have them”

Barth syndrome is a rare, potentially fatal genetic, metabolic disorder that causes serious weakness in the heart, the immune system and muscles generally.  In addition to arrhythmia and heart failure and frequent infections, those affected often suffer severe fatigue and chronic pain and frequently have implanted defibrillators and feeding tubes.  Many of those affected receive heart transplants.

Will McCurdy is one of the oldest living people affected by Barth syndrome. His parents recently appeared on the Today Show to relate their experiences in helping to start BSF.

Team Will, after the 2009 Westchester Triathlon. Row 1 (l-r): Jeff Knopping, Kayleigh Monetti, Heather Segal*, Laura Azar; Row 2: Paul Epstein*, Will McCurdy, Gary Rodbell*, Angelo Mancino, Jack Steinberg; Row 3: Stephen Tunguz, Matt Karp*, Jaime Jofre. Not pictured: Ghent Lummis*, Bob Buly, Francois Odouard, Amy Rosen, Alan Rosen. *Ironmen. Photo by Kate McCurdy

Team Will, after the 2009 Westchester Triathlon. Row 1 (l-r): Jeff Knopping, Kayleigh Monetti, Heather Segal*, Laura Azar; Row 2: Paul Epstein*, Will McCurdy, Gary Rodbell*, Angelo Mancino, Jack Steinberg; Row 3: Stephen Tunguz, Matt Karp*, Jaime Jofre. Not pictured: Ghent Lummis*, Bob Buly, Francois Odouard, Amy Rosen, Alan Rosen. *Ironmen. Photo by Kate McCurdy

 The Barth Syndrome Foundation was formed almost ten years ago by the McCurdys and several other parents who wanted to raise awareness among physicians of this rare disorder, support affected families and fund research into the causes and eventually a cure.  BSF has funded over $1.5 Million in research grants to date and continues to push the boundaries of scientific understanding of Barth syndrome.  Learn more and contribute to Team Will and the Barth Syndrome Foundation at www.barthsyndrome.org.

Team Will is back home now, recovering from both the Ironman and Thanksgiving dinner – and, perhaps, dreaming of their next Ironman challenge.


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