Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), named University of Virginia Children’s Hospital to be the 22nd Certified Duchenne Care Center.
| HACKENSACK, N.J., /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), named University of Virginia Children’s Hospital to be the 22nd Certified Duchenne Care Center. This elite program, created in 2014 as part of PPMD’s Certified Duchenne Care Center Program, continues to review and recognize clinics nationwide for their outstanding neuromuscular programs.
Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in 5,000 live male births. 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 Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care. The University of Virginia’s neuromuscular program is led by Dr. Rebecca Scharf, who is a developmental pediatrician with a keen interest in Duchenne. Over the past four years, she has worked diligently to amass a robust team capable of providing care across the spectrum of the disease. Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and director of PPMD’s Certified Duchenne Care Center (CDCC) Program, is pleased that the University of Virginia Children’s Hospital will now be included in the growing network of Duchenne care offered at the 22 Certified Duchenne Care Centers across the Unites States. “We are excited to include UVA as our first Certified Duchenne Care Center featuring developmental pediatrics in a prominent role in Duchenne surveillance and management. Dr. Scharf understands the developmental, educational, and psychosocial issues that need to be addressed with families throughout their lives. With Drs. Ted Burns, Sarah Jones, and Matthew Elliott providing neurologic management, and Dr. Christopher Lunsford available to address PM&R issues at every clinic, weaving the developmental and psychosocial focus into patient needs is extremely important. We are thrilled to include Dr. Scharf and her amazing team in our expanding CDCC program.” “We thank our patients and families for their support of our program for patients with Duchenne here at UVA Children’s Hospital, and we thank the PPMD for their tireless advocacy on behalf of our patients. It is a privilege to serve this incredible community. I am grateful to our multidisciplinary team, which includes physical therapy, occupational therapy, speech-language pathology, nursing, nutrition, education, orthopedics, physiatry, cardiology, pulmonology, palliative care, psychology, genetic counseling, engineering, orthotics, social work, and many others, for caring so deeply for our patients,” Dr. Rebecca Scharf said. Kinnett says that since launching the program in 2014, PPMD receives weekly inquiries from centers interested in applying for certification. “Families in our community turn to PPMD to help identify the centers in the country providing the best in comprehensive Duchenne care and services. Clinics and clinicians are realizing the value of the Certified Duchenne Care Center Program and therefore strive to be the best facility they can be for Duchenne patients and families. Industry, also, is recognizing the value of including patients in their studies, receiving standardized Duchenne care and, thus, strengthening the outcome measures in their clinical trials. As the importance of a set of standards and guidelines in clinical care are recognized globally, PPMD looks forward to expanding this program internationally in the New Year by partnering with other patient advocacy groups. We also look forward to more certifications in the U.S. in 2019.” 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) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne. We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community. Everything we do—and everything we have done since our founding in 1994—helps people with Duchenne live longer, stronger lives. We will not rest until every person has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook, Twitter, and YouTube. About University of Virginia Children’s Hospital UVA Children’s Hospital provides primary and specialty care to children in more than 30 specialties throughout Virginia. Six UVA Children’s Hospital specialties are ranked in the 2018-2019 “Best Children’s Hospitals” guide by U.S. News and World Report.
SOURCE Parent Project Muscular Dystrophy |
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