Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with 1st Clinic in New York City metropolitan area
WASHINGTON, Oct. 11, 2022 /PRNewswire/ — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced the expansion of their renowned Certified Duchenne Care Center (CDCC) Program with the certification of Stony Brook Children’s Hospital, in Stony Brook, New York. This is an exciting addition to the CDCC Program as it is not only the first certification on Long Island and in the NYC metropolitan area, but brings comprehensive, multidisciplinary Duchenne clinical care to a heavily populated, but underserved region.
Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s Vice President of Clinical Care and Education says the certification of Stony Brook is an exciting addition to the CDCC network, particularly in relation to the number of families affected by Duchenne living in the area. “We have an extraordinary number of families affected by Duchenne living on Long Island or in the New York City area, and until now, they’ve had to travel quite a distance, even out of state, to access optimal Duchenne care. We are thrilled to add Stony Brook Children’s Hospital to our growing CDCC network not only because of the amazing work they are doing, but because of the access to care it creates for so many families,” said Schrader.
The Duchenne care program at Stony Brook Children’s Hospital has grown significantly over the past several years, particularly due to a generous donation from Hope for Javier, a family foundation and longtime PPMD collaborator. Jen Portnoy, Hope for Javier’s co-founder and a Long Island resident, was passionate about improving care for New York families and committed a grant to the hospital to help establish a Duchenne clinic. Led by program director Dr. Peter Morelli, the Stony Brook team worked closely with the organizations to model the new clinic after the PPMD CDCC Program standards.
“We are deeply humbled and grateful that PPMD has chosen to certify the leading destination for Duchenne care in the New York area — Stony Brook Children’s Hospital. As the co-founder of Hope for Javier, my dream has always been to find ways to provide the highest levels of care to children with Duchenne through advocacy, funding, and research. By securing the seed funding behind the Duchenne Center at Stony Brook Children’s Hospital, we wanted to continue to build upon this dream. This certification will do just that — allowing medically underserved boys in the region to access the most robust and comprehensive care standards, ensuring their needs are met and they are exposed to the latest in research and care,” said Portnoy.
The Stony Brook program is led by neuromuscular specialist Dr. Simona Treidler and program director Dr. Peter Morelli, with PNP coordinator Dawn Dawson. According to Dr. Morelli, “Our Duchenne program has expanded from only 10 or 11 families in our first year, to now over 70 and growing. Stony Brook Children’s has made a huge commitment to improve the lives of families affected by Duchenne. Working with PPMD for the last two years to achieve designation is an important part of this commitment. We are very proud now to be a Certified Duchenne Care Center.”
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.
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 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.
With 104 beds, Stony Brook Children’s Hospital is Suffolk County’s only children’s hospital. Part of Stony Brook Medicine, Stony Brook Children’s has more than 180 pediatric specialists in 30 specialties. The hospital is Suffolk County’s only Level 4 Regional Perinatal Center and Level 1 Regional Pediatric Trauma Center. It is home to the nation’s first Pediatric Multiple Sclerosis Center and also offers a Level 3 Neonatal Intensive Care Unit, Duchenne Muscular Dystrophy Center, Celiac Disease and Gluten Sensitivity Center, Healthy Weight and Wellness Center, Cystic Fibrosis Center, Pediatric Hematology/Oncology Program, Pediatric Cardiology Program, Pediatric HIV and AIDS Center. To learn more, visit www.stonybrookchildrens.org.
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SOURCE Parent Project Muscular Dystrophy (PPMD)
