Parent Project Muscular Dystrophy Returns to Baltimore for Annual Connect Conference; Presenters Include FDA, Major Pharma
HACKENSACK, N.J., June 24, 2013 /PRNewswire-USNewswire/ — Parent Project Muscular Dystrophy (PPMD) will return to Baltimore for their Annual Connect Conference, the largest, most comprehensive annual, international conference focused entirely on Duchenne muscular dystrophy (Duchenne), June 27 – 30, 2013.
Researchers, scientists, and Duchenne experts from around the world travel to the Connect Conference every year to share with families the latest in muscular dystrophy research and care. This year’s agenda boasts 56 presentations by over 85 Duchenne experts and 11 industry partners, including GSK, Prosensa, Sarepta Therapeutics, and PTC Therapeutics.
In addition to extensive presentations regarding clinical research in Duchenne and the latest updates on care, PPMD will outline their comprehensive advocacy strategy. In April, PPMD released Putting Patients First, a white paper outlining recommendations to speed responsible access to new therapies for Duchenne and other, rare, serious, and life-threatening neurological disorders. PPMD plans to update the community on the ongoing dissemination of this white paper and the continued quest for accelerated approval from federal agencies. Other advocacy highlights include Robert Temple, MD, Deputy Director for Clinical Science from the U.S. Food and Drug Administration (FDA) and Marielena McGuire, PhD from the Department of Defense (DOD).
PPMD’s Annual Connect Conference will also feature a pre-conference meeting – Transition and Duchenne. Attendees include parents, providers, and young adults living with Duchenne. The goal of this meeting is to begin to address the needs of individuals living with Duchenne as they transition through pediatrics and adolescence to adulthood, and begin to develop a comprehensive program to assist with this complex process.
Featured speakers at PPMD’s Annual Connect Conference will include celebrated author Mary-Lou Weisman, Mitchell’s Journey founder Chris Jones, acclaimed Duchenne blogger Ivy Scherbarth, and keynote speaker Evelyn Resh, CNM, MPH.
Pat Furlong, Founding President and CEO says, “This year’s Connect Conference is going to be amazing! There has been such momentum in the community since last year’s conference, and we have a packed agenda of information to share with the Duchenne community. The extraordinary researchers, clinicians, scientists, care providers, and industry partners attending this week’s conference are our heroes and friends. They will make an end to Duchenne possible.”
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.
SOURCE Parent Project Muscular Dystrophy