Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, will celebrate World Duchenne Awareness Day (WDAD) on Saturday, September 7.
“Our community has a strength and tenacity that is demonstrated over and over again. Despite challenges and obstacles, we continue to move forward together in our fight to cure Duchenne muscular dystrophy,” said Christine McSherry, founder and President of Jett Foundation. “That is why this year’s awareness day theme is Stronger Than Duchenne. Together we are stronger than Duchenne and we are coming together to celebrate just that.”
In that spirit, Jett Foundation will be welcoming and cheering on the Gals for Cal athletes, as they prepare to race for Duchenne the next day in the Hopkinton Title 9 Triathlon. Gals for Cal athlete, Annie Ganot, will share her personal story as a mom, a “Gal”, and co-founder of Solid Biosciences.
Ashley Kelliher will speak about her involvement with Jett Foundation in honor of her good friend, Cal Quitzau. Kelliher is a returning Gals for Cal athlete and recently finished her fourth JettRide, a cross-country cycling tour for teens to raise awareness and funds for Jett Foundation and Duchenne muscular dystrophy. She also served as a Camp Promise counselor this summer; Camp Promise, a program of Jett Foundation, offers children and young adults with select neuromuscular disorders a free, week-long camp experience at three locations across the country.
Also joining as a guest speaker is Tracy Seckler, founder of Charley’s Fund, a Duchenne advocacy organization named for her son. Seckler has been a champion for the Duchenne Program at University of Massachusetts Medical. The clinic, spearheaded by founding director Dr. Brenda Wong, is dedicated to improving research and care outcomes for children and adults with Duchenne and Becker muscular dystrophies.
As the evening unfolds, the city will show its solidarity with those who suffer from Duchenne as Boston City Hall lights up in red in honor of the cause. Red, often associated with the word “stop”, represents the organization’s dedication to stopping Duchenne in its tracks.
World Duchenne Awareness Day in Waltham is free of cost for families affected by Duchenne, as well as healthcare providers and academics. Tickets are limited. To register to attend the event, please visit www.jettfoundation.org/wdad and to learn more about Duchenne and Jett Foundation, visit https://www.jettfoundation.org
About Duchenne muscular dystrophy
Diagnosed during childhood, Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and premature death. It affects every one in 3,500 live male births and some females. Duchenne has no cure. Children with Duchenne are born seemingly healthy and decline over time, usually losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.
About Jett Foundation
Since 2001, Jett Foundation, a nonprofit located in Plymouth, MA, has worked to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders. It does this by partnering with families impacted by Duchenne muscular dystrophy through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments. For more, visit www.jettfoundation.org.
Media Contact for Jett Foundation
Gabriella Diniz, gabriella@jettfoundation.org, 774-226-3694
