Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with 1st Clinic in Kentucky
WASHINGTON, June 20, 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 of the clinic at Norton Children’s in Louisville, KY. This is an exciting step for the CDCC Program as it brings standardized Duchenne care to a new region of the country with the first certification in the state of Kentucky.
Alexis Hazlett, MSN, RN, CPN, PPMD’s Associate Vice President, Clinical Care, acknowledges the significance of the program’s expansion to include Norton Children’s Neuroscience Institute’s Muscular Dystrophy Clinic, which is affiliated with the University of Louisville School of Medicine. “The neuromuscular team at Norton Children’s has evolved significantly over the past several years to better serve their Duchenne and Becker population, and we are thrilled to include them in our network of certified centers. This certification comes after much enthusiasm and engagement from the team, and we are delighted to recognize those efforts and the excellent level of care the team provides with their inclusion in our CDCC program,” said Hazlett.
Norton Children’s is ranked by U.S. News & World Report as the No. 1 children’s hospital in Kentucky and serves around 40 patients living with “dystrophinopathy,” the spectrum of muscle diseases that are caused by a change in the dystrophin gene. The center serves patients from throughout Kentucky and the surrounding region.
Under the leadership of Drs. Amanda Rogers and Arpita Lakhotia, the clinic’s directors and lead neuromuscular neurologists, the team continues to grow with plans for the expansion of their critical support network, including more dedicated support from their nurse coordinator, social worker, and 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 are very excited for the opportunities that becoming a CDCC will afford our patients and the Duchenne/Becker community in Kentucky and southern Indiana,” Dr. Rogers said. “We believe that this certification will expand access to excellent care to more patients in our region, provide resources and connections to affected patients and families, and help our center stay up-to-date on the highest quality of care standards available for dystrophinopathy 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.
Mena Scavina, DO, PPMD’s Certified Duchenne Care Center Program Advisor is delighted to add Norton Children’s to the growing network of Certified Duchenne Care Centers and to expand the program to include its first center in the state of Kentucky. “PPMD and the CDCC Certification Committee are truly impressed with the work the team at Norton is doing to provide and advance care for people living with Duchenne. It is clear that the clinic team and hospital administration are deeply committed to contributing to the lives of people with Duchenne and Becker, and for that we are grateful.”
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.
ABOUT NORTON CHILDREN’S HOSPITAL
The Norton Children’s name stands for high-quality pediatric care across a spectrum of specialties and locations throughout Kentucky and Southern Indiana. It comprises two hospitals, a medical center, regional outpatient centers, and primary and specialty care physician practices. Norton Children’s is a comprehensive network of highly trained pediatricians, pediatric specialists and support services providing care for children of all ages. As the need for pediatric care has grown in our region, so has the footprint of Norton Children’s. Our medical facilities currently serve more than 200,000 patients and see over 1 million patient visits each year.
SOURCE Parent Project Muscular Dystrophy (PPMD)
