Parent Project Muscular Dystrophy Names Massachusetts General Hospital a Certified Duchenne Care Center

Leading Duchenne Organization Continues to Certify Top Clinics Nationally

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Dec 16, 2014, 02:00 ET

HACKENSACK, N.J., Dec. 16, 2014 /PRNewswire-USNewswire/ -- Massachusetts General Hospital (MGH) 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. MGH is the sixth center to be certified by PPMD, recognizing the Hospital's dedication to improving care for people living with Duchenne.

Dr. Fawn Leigh, Director, Pediatric Neuromuscular Center and Kathi Kinnett, MSN, CNP, PPMD's Vice President of Clinical Care, along with the Pediatric Neuromuscular Center team at Massachusetts General Hospital

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 (TDCI). 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.

The Pediatric Neuromuscular Center at MGH offers coordinated, multidisciplinary care for infants, children and adolescents with a wide variety of neuromuscular disorders, including Duchenne. The program is led by Dr. Fawn A. Leigh, director. Dr Leigh is excited to received PPMD's endorsement of their Duchenne-focused care.

"The clinical and research advancements for muscular dystrophy are impressive," Leigh said. "As a newcomer to the field, I am in awe of the talent and dedication of each and every person who tirelessly work together for the common goal of improving the lives of individuals affected by muscular dystrophy. All of us with the MGH team, are delighted to receive this award and to be a part of the Care Center mission. We are honored to be recognized among these centers of excellence."

Kathi Kinnett, MSN, CNP, PPMD's Vice President of Clinical Care and co-director of TDCI remarked, "Dr. Leigh is a fairly new clinician who has a tremendous amount of compassion and enthusiasm for this community. She has done an amazing job of amassing a very capable team of providers who are able to provide the patients in this center with comprehensive Duchenne care, as well as cutting edge clinical research. The team at MGH is a great example of a center that values listening to the concerns and needs of their patients and families and incorporating these priorities into their overall care strategy. PPMD looks forward to a long and productive working relationship with the Pediatric Neuromuscular Center at MGH and we congratulate them on their certification."

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 Massachusetts General Hospital

Massachusetts General Hospital (www.massgeneral.org), founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $785 million and major research centers in HIV/AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, reproductive biology, systems biology, transplantation biology and photomedicine.

About the Pediatric Neuromuscular Clinic

The Pediatric Neuromuscular Clinic at Massachusetts General Hospital offers coordinated, multidisciplinary care for infants, children and adolescents with a wide variety of neuromuscular disorders, including:

Dystrophinopathy and other congenital muscular dystrophies
Myopathies, limb-girdle muscular dystrophies, myotonic dystrophies, metabolic myopathies, mitochondrial myopathies
Neuromuscular junction disorders including myasthenia gravis
Peripheral myopathy disorders including Charçot-Marie-Tooth disease and other hereditary neuropathies, acquired neuropathies such as acute and chronic inflammatory demyelinating neuropathies, etc.
Friedrich's Ataxia
Spinal Muscular Atrophy (SMA)

To learn more, visit the Pediatric Neuromuscular Clinic's website.

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SOURCE Parent Project Muscular Dystrophy