Parent Project Muscular Dystrophy Launches Every Single One Tour

For 22 years, PPMD has brought together families with leading experts, care providers, and industry partners through our Annual Connect Conference, FACES meetings, and Roundtables. The Connect Conference continues to grow with more researchers, clinicians, and pharmaceutical companies joining entire families who have found the conference as an opportunity to directly interact with thought leaders and reunite with friends.

Now, in an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD is launching a multi-year community experience called the Every Single One Tour.  Combining each of the pillars that make up PPMD's mission – to end Duchenne – the Every Single One Tour will bring updates on research, advocacy, and care to half a dozen cities in 2016.

Combining forces with Certified Duchenne Care Centers, neuromuscular specialists,  FACES coordinators, and DuchenneConnect, and with financial support from industry partners and resource providers, the PPMD team and a rotating roster of special guests will host a FREE day-long meeting packed with important information for families affected by a Duchenne diagnosis. We will also provide the opportunities for professionals to register for CEU-accredited PT training – a service PPMD has provided for the last several years – in several of the cities we visit.

In addition to these comprehensive all-day meetings, the PPMD team will be visiting clinics around the country that are taking care of the Duchenne population but may not have the resources or the reach to expand their program. PPMD will find out what limitations they face as clinicians and meet the families they serve to better understand how we can help. This aspect of the tour kicked off earlier this month with a meeting in Lincoln, Nebraska and the launch of a FACES group there.

Industry partners and resource providers for PPMD's Every Single One Tour include: Kennedy Krieger Institute, University of Utah Hospital, Lurie Children's Hospital, Children's Hospital Colorado, Children's Mercy Hospital, Duke Children's Hospital & Health Center, BioMarin Pharmaceuticals, Marathon Pharmaceuticals, PTC Therapeutics, Pfizer, Santhera Pharmaceuticals, and Sarepta Therapeutics.

To learn more about the Every Single One Tour or any of PPMD's educational programs, please visit PPMD's website.

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.

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SOURCE Parent Project Muscular Dystrophy

Related Links

http://www.parentprojectmd.org