Parent Project Muscular Dystrophy Names Kennedy Krieger Institute a Certified Duchenne Care Center

Sowmya Nath,'s picture
November 18, 2014
Leading Duchenne organization continues to certify top clinics nationally

Hackensack, NJ –  Kennedy Krieger Institute in Baltimore, Maryland was named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy (Duchenne). Kennedy Krieger Institute is the fifth center to be certified by PPMD, recognizing the Institute’s dedication to improving care for people living with Duchenne.

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500-5,000 live male births.

Earlier this year, PPMD launched the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative. PPMD will continue to award qualified centers the title of Certified Duchenne Care Center over the next several months 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 promises to insist that all people with Duchenne receive comprehensive care.

Kennedy Krieger offers a comprehensive, interdisciplinary, individualized approach to all stages of care. Dr. Kathryn Wagner is the director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and an associate professor of neurology and neuroscience at the Johns Hopkins School of Medicine. For years, Dr. Wagner has played an integral role in helping PPMD improve care in Duchenne. Dr. Wagner cares for patients throughout their lifespan, but has especially been acknowledged by the Duchenne community for recognizing and addressing the unique needs of young adults living with Duchenne.

Kathi Kinnett, MSN, CNP, PPMD’s vice president of Clinical Care and co-director of TDCI remarked, “Dr. Wagner has long been a leader in Duchenne care. Her investment in patients and their families is apparent and appreciated by the Duchenne patient and professional communities. Her dedication to both care and research has long been recognized.  PPMD has worked closely with Kennedy Krieger since the inception of the Center for Genetic Muscle Disorders five years ago and we are excited to award the title of Certified Duchenne Care Center to Kennedy Krieger.”

Kennedy Krieger Institute Duchenne Care Center

Dr. Wagner and Dr. Gary Goldstein, president and chief executive officer of Kennedy Krieger Institute (far right) with Kinnett and Dr. Stanley Nelson, co-director of the Center for Duchenne Muscular Dystrophy at UCLA

Dr. Wagner responded to the news that Kennedy Krieger was receiving certification, saying, “PPMD has had a profoundly positive impact on the lives of those with Duchenne muscular dystrophy. This has included funding of research, education of parents, lobbying for legislative changes and establishing clinical care guidelines. All of us at Kennedy Krieger are proud to be a part of this new initiative to recognize clinical centers of excellence so that families know that they are receiving the best available care.”

To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website.

About Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500-5,000 live male births (about 20,000 new cases worldwide each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35 percent of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs young men 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 young men 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 boys with Duchenne live longer, stronger lives. We will not rest until every young man 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.

About Kennedy Krieger Institute

Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain, spinal cord and musculoskeletal system, the Kennedy Krieger Institute in Baltimore, Md. serves more than 20,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit kennedykrieger.org.

About the Center for Genetic Muscle Disorders

The Center for Genetic Muscle Disorders at Kennedy Krieger Institute provides expert care for children and adults who have, or are at risk of developing, a muscle disorder from genetic causes, no matter the severity. The center sees children and adults with a range of disorders and diagnoses, including muscular dystrophies, congenital myopathies, and muscle diseases. It provides current interdisciplinary clinical care for patients by experts in muscle disease, while leading research programs to develop better and novel therapeutics to treat these disorders in the future. For more information on the Center for Genetic Muscle Disorders at Kennedy Krieger Institute, visit kennedykrieger.org/muscledisorders.

Media Contact

Will Nolan
Parent Project Muscular Dystrophy
Phone: (201)250-8440

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