Jett Foundation is pleased to share our continued support of The Duchenne Program at UMass Medical School in Worcester, MA in partnership with Charley’s Fund. This year, Jett Foundation has committed $10,000 to the program to help ensure its continued success in bringing quality, comprehensive care to people living with Duchenne in the Massachusetts area and beyond.
In 2018, Charley’s Fund–a nonprofit organization based in Massachusetts dedicated to advancing new treatments and quality clinical trials in Duchenne–launched its greatest initiative to date: the Duchenne Program.
The Duchenne Program is a hospital-based clinic and research site devoted to individuals impacted by Duchenne and Becker muscular dystrophy. The mission: to deliver the best care possible to the Duchenne community while urgently advancing research for improved outcomes and new therapies.
“This clinic is different from others because our clinic director, neurologist Dr. Brenda Wong, has the freedom to be fully focused on Duchenne,” says Tracy Seckler, founder of Charley’s Fund and mom to the fund’s namesake, Charley, a 21-year-old living with Duchenne. “There is no interruption in care and visits consist of meeting with a multi-disciplinary team of specialists and clinicians based on individualized need.”
Because Duchenne involves every system in the human body, a typical 2-day visit to the clinic includes appointments, tests, and scans with not only Dr. Wong, but also specialists like an optometrist, cardiologist, endocrinologist, pulmonologist, orthopedist, physical therapist, occupational therapist, dietician, and more. The team goes over test results and recommended changes to the care regime. Dr. Wong follows up after a visit with a comprehensive clinic note in a patient portal of everything that happened and was recommended during the clinic visit.
“Every time we see someone come in, our patients put a big smile on our face,” says Dr. Wong. “You all have made this program possible.”
Tracy says that it is so important to have the assistance of organizations like Jett Foundation to maintain the success of The Duchenne Program. Support from other organizations allows the clinic to provide quality healthcare that makes a tangible difference for families and that is often not covered by the typical health system. Philanthropy plays a huge part in covering the gap of what insurance provides. Beyond the financial aspect, working with other organizations provides additional resources to quality of life.
“Partnerships like ours with Jett Foundation serve as a resource for patients and families, for both their physical health and incredible opportunities to live productive great lives. When they come to the clinic, they also see Jett Foundation’s opportunities, and having them engage in programs like Jett’s is so important to wellbeing.”
Jett Foundation is proud to be one of 11 advocacy organizations supporting the clinic.
“It is an incredible reflection of solidarity from the Duchenne community,” says Eric Snyder, Jett Foundation Executive Director. “A big thank you to Charley’s Fund for bringing us all together in this meaningful way.”
If you or your loved one is interested in receiving care from the clinic, call 774-441-7615 or email DMDProgram@umassmemorial.org between the hours of 8:00 a.m. and 4:30 p.m. EST Monday-Friday. To learn more about the work of The Duchenne Program, visit www.umassmed.edu/duchenne.
