Hackensack, NJ – Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne) will launch the Every Single One Tour with a first roundtable meeting in Baltimore on April 16 at the Kennedy Krieger Institute.
For 22 years, PPMD has brought together families with leading experts, care providers and industry partners through its Annual Connect Conference, FACES meetings and Roundtables.
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 daylong meeting offering important information for families affected by a Duchenne diagnosis. Opportunities for professionals to register for CEU-accredited PT training – a service PPMD has provided for the last several years – will also be provided in several of the on the tour.
In addition to these comprehensive 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, visit parentprojectmd.org.