Parent Project Muscular Dystrophy Hosts First Transforming Duchenne Care Meeting

Jun 25, 2012, 08:00 ET from Parent Project Muscular Dystrophy

Meeting to Take Place at Annual Connect Conference in Ft. Lauderdale

HACKENSACK, N.J., June 25, 2012 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD) will host the first Transforming Duchenne Care Meeting, June 27-28, 2012, immediately preceding the Annual Connect Conference in Fort Lauderdale, Florida. The goal of the Transforming Duchenne Care Meeting is to bring together leadership from top medical institutions, neuromuscular experts, and patient representatives to discuss, in an open forum, the ideal configuration, features, services, and structure of state-of-the-art family centered care for patients with Duchenne muscular dystrophy (Duchenne).


Duchenne is a complex, multi-system disorder.  Recent national meetings have indicated a lack of standardized definitions of best practices for multidisciplinary care of Duchenne patients. This meeting comes out of a need to identify and define benchmarks for best practices and standards of care in Duchenne.

Attendees at the meeting will include representatives from any medical institution interested in working to improve care delivery models for patients with Duchenne.  Each representative was asked to bring a senior member of the hospital leadership, such as the CEO, Chair of Pediatrics, or Chair of Neurology.

Explains PPMD President and CEO, Pat Furlong, "The idea of a Transforming Duchenne Care Meeting is long overdue in this community. We are so pleased to be assembling this incredible group of people and hope to take standardized care in Duchenne to the next level. We have requested that the Duchenne care provider at the participating institutions brings a senior member of their hospital so that the administration can fully understand the need for improved care and can also help determine what is feasible from their point of view. Ending Duchenne is a team effort and we are grateful to have such amazing thought leaders on our team."

Steve Allen, CEO of Nationwide Children's Hospital in Columbus, Ohio, is one of the administrators:  "This meeting is a great opportunity to discuss Duchenne care in depth and figure out how we can best take care of this patient population. By continuing to create best practices in Duchenne care, we are giving more patients in more parts of the country an opportunity to live healthier lives. We applaud Pat and PPMD for continuing to see gaps in the Duchenne space and taking actions that will have long term effects."

At the end of the Transforming Duchenne Care Meeting, the group of attendees will generate a consensus list of suggestions and recommendations that can be used to define and develop a model of care for patients with Duchenne.  Ultimately, the intent is to utilize the model to create a network of Duchenne Centers of Excellence.

The Annual Connect Conference started almost two decades ago as a small group of parents gathering to discuss current Duchenne topics and has evolved into the largest, most comprehensive annual, international conference focused entirely on Duchenne. View the complete agenda for this year's Annual Connect Conference on PPMD's website.

About Parent Project Muscular Dystrophy
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.  Our mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community. PPMD is headquartered in Middletown, Ohio with offices in Hackensack, New Jersey.  For more information, visit

SOURCE Parent Project Muscular Dystrophy