Great Barrington — At its weekly meeting on May 30, the Great Barrington Rotary Club recognized Tracy Seckler as its citizen of the year. Seckler is best known for her work in establishing Charley’s Fund with her husband Benjy.
Seckler has done a remarkable job to raise $36-plus million to support research on Duchenne’s Muscular Dystrophy. Her son Charley is a 11thgrader at Monument Mountain Regional High School.
Confronted with Charley’s diagnosis, Seckler channeled her energy (and there’s lots of it) to make his life better, find a cure and raise awareness. Perhaps more importantly, she has been a vocal advocate to push for change at the local and national level.
Her efforts have led to the approval by the U.S. Food and Drug Administration of Eteplersin, an innovative new treatment. Her admirers say Seckler models what they all hope to be – she’s passionate, caring, effective, transformative, and a great communicator.
At the Rotary Club luncheon, Kim Cormier, a 6thgrade teacher at Monument Valley Middle School, spoke of Seckler’s impact on her and her students. Cormier has developed a curriculum around Seckler’s efforts that has inspired hundreds of students to engage in service.
That work continues at Monument Mountain with help from science teacher Lisa Baldwin and a group of students calling themselves Team Monument. They’ve organized raffles, clothing sales and even designed a teen-focused clothing line.
Prescott Stewart, director of advancement at the UMass Medical School, spoke of the recent partnerships with Charley’s Fund to establish the only comprehensive Duchenne center in the northeastern U.S. This summer, boys from around the world including Dubai, Turkey, Ohio, and Massachusetts, will receive treatments and become part of several studies.
In receiving the recognition, Seckler shared that her efforts have been powered by other people. She credits her husband with “not accepting this and asking me a million questions and telling me what we need to do next.” She appreciates how “our small community has had a worldwide impact.” Finally, she appreciates Charley’s friends or posse who make a horrible situation a little better.
Seckler is doing remarkable work for tens of thousands of kids in the U.S. and hundreds of thousands of kids in world.
Additional information can be found here: https://www.charleysfund.org/
