Parent Project Muscular Dystrophy Names Seattle Children's Hospital Certified Duchenne Care Center

Fourth Clinic to Receive Certification from Leading Duchenne Organization

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Sep 17, 2014, 02:15 ET

HACKENSACK, N.J., Sept. 17, 2014 /PRNewswire-USNewswire/ -- Seattle Children's Hospital was named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy (Duchenne). Seattle Children's is the fourth center to be certified by PPMD, recognizing the hospital'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 live male births. Established in 1980's, the Muscle Clinic at Seattle Children's Hospital is a multidisciplinary clinic that serves around 300 children and adolescents from across the Pacific Northwest; approximately 100 have Duchenne.

PPMD recently launched the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative. PPMD will continue to award other 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, 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.

The Certified Duchenne Care Center Program was a direct result of PPMD's Transforming Duchenne Care Initiative (TDCI). Launched in 2012, TDCI was the coming together of health care providers and administrators from 17 institutions, parents, representatives from government agencies, and the pharmaceutical industry.

Like other certified centers – Children's Hospital Colorado, Nationwide Children's Hospital in Columbus, and Cincinnati Children's Hospital – Seattle Children's has been a pivotal partner with PPMD in the Transforming Duchenne Care Initiative. Susan D. Apkon, MD, serves as director of the Rehabilitation Department at Seattle Children's and is an authority in Duchenne care. Apkon has played an integral part in the TDCI and has been named a Top Doctor by Seattle Magazine consistently for the last several years.

PPMD's Vice President of Clinical Care Kathi Kinnett, MSN, CNP and co-director of TDCI remarked, "Dr. Apkon is a well respected leader in the Duchenne community and loved by her patients and their families. For years, she has made Duchenne care a priority. She and the Seattle Children's team are a perfect example of why PPMD created the Certified Duchenne Care Center Program – we want to celebrate centers that insist on comprehensive care for our community."

"We are honored to be named a Certified Duchenne Care Center, underscoring Seattle Children's commitment to providing the highest-quality, comprehensive care to children with Duchenne," said Apkon. "I am proud of the expertise and passion in which our team members care for children with Duchenne."

Kinnett said she is excited about the continued growth of PPMD's Certified Duchenne Care Center Program, and the collaborative efforts it recognizes: "PPMD is thrilled to have such dedicated and passionate partners like Seattle Children's Hospital that are dedicated to the essence of PPMD's mission to end Duchenne."

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 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 Seattle Children's Hospital
Consistently ranked as one of the best children's hospitals in the country by U.S. News & World Report, Seattle Children's serves as the pediatric and adolescent academic medical referral center for the largest landmass of any children's hospital in the country (Washington, Alaska, Montana and Idaho). For more than 100 years, Seattle Children's has been delivering superior patient care while advancing new treatments through pediatric research. Seattle Children's serves as the primary teaching, clinical and research site for the Department of Pediatrics at the University of Washington School of Medicine. The hospital works in partnership with Seattle Children's Research Institute and Seattle Children's Hospital Foundation. For more information, visit www.seattlechildrens.org or follow us on Twitter or Facebook.

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SOURCE Parent Project Muscular Dystrophy