HACKENSACK, N.J., Jan. 12, 2015 /PRNewswire-USNewswire/ --Parent Project Muscular Dystrophy (PPMD), a nonprofit organization dedicated to the fight to end Duchenne muscular dystrophy (Duchenne), announced that John Porter, PhD, former program director of the National Institutes of Health (NIH)/National Institute of Neurological Disorders and Stroke (NINDS) will take on the role of Chief Executive Officer for the organization.
For 20 years, PPMD has led the fight to end Duchenne – the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500 to 5,000 live male births. The loss of a key muscle protein called dystrophin causes muscle wasting and weakness, eventually leading to the loss of ambulation, difficulty breathing, and heart failure. Death typically occurs in the mid-to late 20s.
As program director at the NIH/NINDS, Dr. Porter was responsible for managing a portfolio of research grants across neuromuscular disorders and served as Executive Secretary of the interagency Muscular Dystrophy Coordinating Committee. Prior to that, he served as Professor of Neurology at Case Western Reserve University, where he was supported by the NIH and advocacy groups for research on muscle biology in health and disease, including muscle group responses to Duchenne.
"PPMD is beyond thrilled to have John Porter joining our team," said PPMD's Founding President Pat Furlong. "For years now, John has been an ally of the Duchenne community, making Duchenne research a priority at NINDS. He helped put this disease on the federal radar and as a result has helped facilitate research from minimal investment from the federal government, into tens of millions of dollars dedicated to muscular dystrophy research. When I heard John was retiring from NIH, I thought 'what a dream it would be to have someone with John's talents at PPMD, dedicated to this community.' Today is proof that dreams do come true!"
As CEO, Dr. Porter will help PPMD continue to integrate programs to maximize impact, building upon current programs and exploring opportunities to expand the research pipeline, with the goal of accelerating progress and approvals. Dr. Porter joins Pat Furlong and Chief Operating Officer, Kimberly Galberaith, in leading the organization. As founding president, Furlong will continue to provide strategic direction of PPMD in support of the mission she helped set forth 20 years ago in honor of her sons and all families affected by Duchenne. Porter's appointment will complement her ongoing involvement in the Duchenne community, interfacing with patients and families, and helping to drive the organization to its goal of ending Duchenne.
"After conducting research in my own laboratory in academia for over 20 years, and then facilitating the funding of neuromuscular disease research by the NINDS for the next 10 years, PPMD offered me this unparalleled opportunity to synthesize that experience and bring it directly to bear on the challenges of better quality of life and novel treatments for people with Duchenne," said Dr. Porter. "I'm thrilled to join such a strong and vibrant team at PPMD, and work with the broader community of dedicated scientists, physicians, patient advocates, and families, in a leave no-stone-unturned approach to end Duchenne."
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.