MIDDLETOWN, Ohio — Parent Project Muscular Dystrophy (PPMD), the largest grassroots organization in the U.S. that is entirely focused on Duchenne muscular dystrophy (DMD), announced today the hiring of Dr. Giovanna M. Spinella as its medical director and its plans to create a systematic approach to the clinical management of boys with DMD.
“Dr. Spinella’s appointment comes at a critical time,” said Pat Furlong, PPMD’s Founder and Executive Director. “There has been a growth in the expertise and experience of doctors at clinical centers for boys with DMD, and a growth in the potential for discovery of new compounds and treatments; there are more tools now than ever before to look at Duchenne and to make new discoveries.”
Dr. Spinella is a pediatric neurologist with 16 years of experience at the National Institutes of Health, the country’s leading medical research agency. She is currently a consultant for the Office of Rare Diseases at the NIH and spent four years as the science program director for this office. Dr. Spinella is a resident of Falls Church, Virginia, and until this year served as staff neurologist at Walter Reed Army Medical Center.
“Trying to create programs where one can offer the highest quality clinical care is a challenging and exciting opportunity,” said Dr. Spinella. “I think we can raise the bar on the care, health, and quality of life for the boys with Duchenne.”
Duchenne muscular dystrophy is the most common lethal genetic disorder diagnosed during childhood and affects approximately 1 in 3,500 boys. It is a progressive muscle disorder that causes loss of muscle function and independence. Each year, an estimated 20,000 children worldwide are born with DMD. To date, there is no cure.
“Because care for these boys is now irregular and inconsistent, a standard approach is needed to get accurate data,” said Dr. Spinella. “With that data, the medical community will be in a better position to determine which potential treatments will work.”
The appointment marks a significant evolution for Parent Project Muscular Dystrophy. From its roots as a patient advocacy group, PPMD has grown into an organization that is leading medical advances, and investing in research, education, and advocacy to improve the lives of those affected by Duchenne muscular dystrophy.
To set up an interview with Dr. Spinella and Pat Furlong, please contact Sharon Lewis at slewis @douglasgould.com or 914-833-7093.
Parent Project Muscular Dystrophy (PPMD) is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. The organization’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion. PPMD is headquartered in Middletown, Ohio with offices in Fort Lee, New Jersey.
For more information, visit www.parentprojectmd.org.
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