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Parent Project Muscular Dystrophy Names Duke Medicine Certified Duchenne Care Center

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2.3 from 7 votes
Monday, June 15, 2015

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Duke Children's Hospital & Health Center (Duke Children's) was named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne). Duke Children's is the ninth center to be certified by PPMD's Certified Duchenne Care Center Program, which supports standardized, comprehensive care, and services for all people living with Duchenne, and began certifying qualifying centers in March 2013. PPMD recognizes the development of Duke Children's multidisciplinary care team and their dedication to providing the best care and services for people and families living with Duchenne.

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

Duke Children's Hospital & Health Center features the Duke Children's Neuromuscular Clinic co-directed by Dr. Edward C. Smith and Dr. Richard M. Kravitz and coordinated by Jennifer Olson, RN, BSN. Both Dr. Kravitz and Dr. Smith specialize in pediatric neuromuscular disorders, including Duchenne.

"We are pleased that PPMD has recognized Duke Children's Hospital & Health Center and our neuromuscular clinic as a leader in the diagnosis, care, and treatment of Duchenne muscular dystrophy," Dr. Smith said.

"Duke has had a long commitment for the care of patients with neuromuscular weakness," Dr. Kravitz said. "We look forward to working in partnership with PPMD in further improving the care and quality of life of boys and young men with Duchenne muscular dystrophy. We are committed to providing our patients and their families with quality, comprehensive care as we continue to develop the best and most innovative models for treating this disease."

Kathi Kinnett, MSN, CNP, PPMD's Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI), is excited to certify the center at Duke Children's and says: "Dr. Smith, Dr. Kravitz, and their team have shown a true commitment to providing optimal comprehensive care to people with Duchenne in their community and beyond. They have created a wonderful facility and program that incorporates the patient and family voice, and where patients and families truly come first. We congratulate everyone on the Duke team and thank them for the dedication to the fight to end Duchenne."

In 2014, PPMD launched the Certified Duchenne Care Center Program as part of its robust 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.

To learn more about PPMD's Certified Duchenne Care Center Program, visit PPMD's website. For more information about the Neuromuscular Program at Duke Children's, visit their 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.

Source: Parent Project Muscular Dystrophy
2.28571428571
2.3 from 7 votes
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