Hackensack, NJ – February 16, 2017 – Ann & Robert H. Lurie Children’s Hospital of Chicago (Lurie Children’s) became the 14th clinic named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne). PPMD’s Certified Duchenne Care Center Program supports standardized, comprehensive care, and services for all people living with Duchenne, and began certifying qualifying centers in March 2014. PPMD is pleased to recognize the team at Lurie Children’s for their innovative and multipronged approach to Duchenne care for people living with the disease.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 5,000 boys.
Led by Medical Director Dr. Nancy Kuntz, Lurie Children’s boasts the Mazza Foundation Neuromuscular Program which offers specialized care to families and children with medically-challenging neuromuscular conditions. “We are honored to be receiving this certification,” said Dr. Kuntz who is also a Professor of Pediatrics and Neurology at Northwestern University Feinberg School of Medicine. “This acknowledges the hard work of our specialists and clinicians who work tirelessly for this patient population.”
Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI), is thrilled to award the Lurie team certification for their commitment to the Duchenne community: “The reputation of the neuromuscular program at Lurie Children’s has always been stellar. Dr. Kuntz is a true leader of the program and beloved by her patients. We are extremely happy to include them in our growing network of comprehensive Duchenne care.”
Lurie Children’s offers an advanced level of care for children suffering from muscular dystrophy, spinal muscular atrophy, and other neuromuscular disorders. The program also trains future specialists, provides state-of-the-art diagnostic and treatment resources and advances cutting-edge research in this emerging field.
Kinnett says that PPMD receives numerous requests from centers wanting to be considered for certification. “When PPMD launched our certification program in 2014, we had no idea that the Duchenne community would respond so positively. Families have come to rely on our certification as an indication that these clinics are the best of the best. We will continue to certify more clinics across the country throughout 2017, recognizing teams of physicians for their leadership in Duchenne care, which in turn will enable families to make the best choice for the care of their child.”
In 2014, PPMD launched the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative (TDCI). PPMD will continue to award qualified centers the title of Certified Duchenne Care Center in an effort to ensure 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.
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.