Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with Clinic in Massachusetts
WASHINGTON, June 16, 2023 /PRNewswire/ — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced the expansion of its renowned Certified Duchenne Care Center (CDCC) Program with the certification at Boston Children’s Hospital. This is an exciting step for the CDCC Program as it brings standardized Duchenne care to Massachusetts.
Dr. Mena Scavina, PPMD’s Certified Duchenne Care Advisor, completed a site visit for Boston Children’s in the fall of 2022 as part of the rigorous application process. Scavina acknowledges the significant impact of the program to include Boston Children’s. “Boston Children’s comprehensive neuromuscular clinic includes sub-specialists with expertise in muscular dystrophy to address the various needs of individuals with Duchenne and Becker. Boston Children’s is run extremely well with experienced and dedicated providers resulting in a positive experience for the Duchenne and Becker population and their families. We are thrilled to recognize those efforts and the excellent level of care the team provides with their inclusion in our CDCC program.”
Boston Children’s serves over 150 patients living with “dystrophinopathy,” the spectrum of muscle diseases that are caused by a change in the dystrophin gene. The CDCC serves patients from throughout Massachusetts and surrounding states.
Under the leadership of Dr. Partha Ghosh, the CDCC director and lead neuromuscular neurologist, the team continues to grow with plans for expansion of their critical support network, including more dedicated support from their social worker and newly appointed registered dietician. This will further elevate the care they already provide to their patients, continuing to build upon the comprehensive, quality care they ensure their patients receive.
“We at Boston Children’s Hospital’s multidisciplinary DMD center are really excited to be part of PPMD’s Certified Duchenne Care Centers. Being a Certified Duchenne Care Center allows our team to collaborate with PPMD to better support patients with DMD and their families, through patient and family advocacy, educational opportunities, and networking. Also, being a certified center reflects our dedication to this patient population in providing the comprehensive, optimal care they need,” says Dr. Ghosh.
PPMD’s Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification means centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize heterogeneity in clinical research outcomes, and comply with standards in clinical care that were established by the CDC’s Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne and Becker receive comprehensive care.
Alexis Hazlett, PPMD’s Associate Vice President of Clinical Care, is delighted to add Boston Children’s to the growing network of Certified Duchenne Care Centers and to expand the program to include its only center in the state of Massachusetts. “PPMD and the CDCC Certification Committee are truly impressed with the work the team at Boston Children’s is doing to provide and advance care for people living with Duchenne and Becker. It is clear that the clinical team and hospital administration are deeply committed to contributing to the lives of people with Duchenne and Becker, and for that we are grateful. We are excited to see what amazing things will come from this partnership for the Duchenne community, and look forward to a long and productive collaboration,” said Hazlett.
To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website. Click here to learn more about the history of PPMD’s Certified Duchenne Care Center Program and to access PPMD’s first published article on the program.
ABOUT PARENT PROJECT MUSCULAR DYSTROPHY
Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.
We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won five FDA approvals.
Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.
SOURCE Parent Project Muscular Dystrophy (PPMD)
