Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announces 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.
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]