Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with Addition of Clinic in Eastern Pennsylvania "The Penn State Health Pediatric Neuromuscular Multidisciplinary Care Team has worked tirelessly to provide a family and patient-centered approach to the care and support of children with Duchenne and Becker muscular dystrophy," said Dr. Ashutosh Kumar, pediatric neurologist and assistant professor of pediatrics and neurology at Penn State Health Children's Hospital. "We believe strongly in the mission and goals of PPMD and are extremely proud to achieve this prestigious care distinction. This achievement underscores the organization's dedication to promoting excellence in Duchenne care. Penn State Health is committed to collaborating with PPMD to help obtain early diagnosis, maximize functional abilities, improve patient quality of life, and further research and treatment efforts for this complex and challenging disease." As part of the rigorous CDCC application process, Dr. Mena Scavina, PPMD's Certified Duchenne Care Advisor, conducted a comprehensive site visit to the clinic in late 2023 and praises the team's dedicated efforts in delivering an all-encompassing and supportive clinic experience for patients and their families. Dr. Scavina noted, "The commitment of the team at Penn State Children's to care for individuals with dystrophinopathies is commendable. Their emphasis on providing a comprehensive and resourceful clinic experience for families, active engagement in clinical trials, and enthusiasm about working with colleagues in the CDCC network, showcases their dedication to advancing care for their patients." 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 receive comprehensive care.
Rachel Schrader MS, APRN, CPNP-PC, PPMD's Vice President of Clinical Care and Education, says the certification of Penn State Health Children's Hospital is an exciting addition to the CDCC network and its ultimate goal of bringing optimal Duchenne care to all people, which will now expand to the eastern region of Pennsylvania and surrounding areas. "It is evident that the neuromuscular team at Penn State Health Children's Hospital goes above and beyond for their patients and families affected by Duchenne and Becker. We are thrilled to add their clinic to the growing CDCC network and look forward to expanding access to comprehensive and coordinated dystrophinopathy care." 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. Duchenne is a 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 seven 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.
ABOUT PENN STATE HEALTH CHILDREN'S HOSPITAL: