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PPMD Names Massachusetts General Hospital a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Massachusetts General Hospital (MGH) our sixth Certified Duchenne Care Center, recognizing the Hospital’s dedication to improving care for people living with Duchenne.

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. 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.”

-- Dr. Fawn A. Leigh, director

"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.”

-- Kathi Kinnett, MSN, CNP, PPMD’s Vice President of Clinical Care and co-director of TDCI

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

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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Staff
Comment by Kathi Kinnett on January 5, 2015 at 9:53am

Bill - 

Kaylen Smith is the Clinical Patient Services Coordinator for the Neuromuscular Program at Massachusetts General Hospital.  Her phone number is 617-643-4645, option 2.  She will be able to answer any questions that you might have.

Comment by william a flannery on January 2, 2015 at 6:23am

Is there a process to follow to apply for care at MGH. I have a 10 year old nephew with Duchene's currently under care at Columbia Presbyterian .

We live in the NY area .

Thank you,

 

Bill

PLesae

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