Parent Project Muscular Dystrophy Names Stanford Comprehensive Neuromuscular Clinic at Lucile Packard Children’s Hospital a Certified Duchenne Care Center

Leading Duchenne Organization Awards Eighth Clinic Certification as Part of Effort to Ensure People with Duchenne Receive Optimal Care

For Release: March 6, 2015

HACKENSAK, NJ. — Stanford Comprehensive Neuromuscular Clinic at Lucile Packard Children’s Hospital (Stanford) 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) and demanding optimal care for all people with Duchenne. Stanford is the eighth center to be certified by PPMD, recognizing the Clinic’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.

Stanford Comprehensive Neuromuscular Clinic at Lucile Packard Children’s Hospital is led by Dr. John W. Day, MD, PhD. Dr. Day has over 25 years of experience in diagnosing, treating, and supporting patients with neuromuscular diseases.  He is involved in ongoing research defining causes, diagnosis, and novel treatments of genetic neuromuscular disorders.  Prior to his arrival at Stanford in 2011, Dr. Day directed the Paul and Sheila Wellstone Muscular Dystrophy Center at University of Minnesota.  Dr. Day serves as an advisor to many scientific committees researching neuromuscular diseases, including NIH’s Advisory Committees on Muscular Dystrophy and Muscular Dystrophy research.

Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and co-director of TDCI congratulated Dr. Day and his team at Stanford: “Dr. Day has been a longtime partner in the Duchenne community, as an advocate for both optimal care in the patient community and as a leading researcher in muscular dystrophy. The clinical team he has assembled at Stanford is a shining example of the skill, compassion, and understanding we look for in certifying clinics. Congratulations and thank you to Dr. Day and everyone at Stanford Comprehensive Neuromuscular Clinic.”

“Given PPMD’s preeminent role in the Duchenne Muscular Dystrophy Community, we are honored that the Stanford Comprehensive Neuromuscular Program is being recognized as a PPMD Certified Care Center,” said Dr. Day. “The Stanford Neuromuscular Team of experts is fully aligned with PPMD’s mission of conquering Duchenne’s effects on families, children, and adults; we look forward to linking arms with all PPMD Certified Centers to attain our common goal of optimizing care, which is the foundation for both successful research of future treatments, and effective advocacy so those with Duchenne can lead more fulfilling lives today.”

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.

To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website. For more information about Stanford Comprehensive Neuromuscular Clinic at Lucile Packard Children’s Hospital, visit the Stanford 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 Stanford Comprehensive Neuromuscular Clinic at Lucile Packard Children’s Hospital Stanford

Accurate diagnosis and treatment of neuromuscular conditions is often complex, and may require a variety of interdisciplinary specialists working together. At Lucile Packard Children's Hospital Stanford, our internationally recognized team of experts serves infants to young adults living with close to 50 different neuromuscular conditions.

Our mission is to apply groundbreaking research and personalized care to diagnose and treat patients with even the most challenging conditions, and to deliver superior outcomes through multi-disciplinary care. Patient care teams are comprised of neurologists, a physical therapist, occupational therapist, speech and language pathologist, social worker, nurse practitioner, genetic counselor, and community outreach liaison.

Media Contact:

Will Nolan
(201) 250-8440