PLYMOUTH, MA – August 14, 2018 - Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy, will celebrate World Duchenne Awareness Day (WDAD) on Friday, September 7. As a testament to the community’s unity and commitment to fighting the disease, the foundation will host its annual event at Cambridge’s Kimpton Hotel Marlowe. The event will be sponsored by community partners in the Duchenne space, including Capricor, Catabasis, JB’s Keys to DMD, Mobility Works, Pfizer, Santhera, Sarepta, Solid Biosciences, Summit, and Wave.
“Our community has accomplished so much together over the past year, we are excited to share in those successes but also to have important conversations about the challenges we still face,” said Christine McSherry, founder and President of Jett Foundation. “This year's WDAD theme is Standards of Care. Excellent care begins with education and continues with a commitment to ensuring access to care is guaranteed and research is supported.”
At the event, Jett Foundation will be hosting Dr. Brenda Wong as an honored guest to welcome her to the New England Duchenne community. Dr. Wong is the founding clinic director from the Duchenne Program at University of Massachusetts Medical: a new clinic dedicated to improving research and care outcomes for children and adults with Duchenne and Becker muscular dystrophies.
Joining as a guest speaker, Alan Chaulet, a 28-year-old Duchenne patient from Lexington, MA, will share his experiences with Duchenne and his work as vice president of the nonprofit All Wheels Up. The nonprofit works to fix a pressing problem for people who use wheelchairs: accessibility of airplanes. Also speaking is Jillian Moore. Jillian is mom to Aiden, a DMD patient, and will speak to the audience about her perspective as a parent.
As the evening unfolds, the city will show its solidarity with those who suffer from Duchenne as famous landmarks around Boston including Government Center and the Leonard P. Zakim Bunker Hill Memorial Bridge will light 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 Cambridge 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, firstname.lastname@example.org, 774-226-3694