Parent Project Muscular Dystrophy (PPMD) is reaching out to families affected by Duchenne muscular dystrophy (DMD) through its ‘Every Single One’ Tour, a multi-year campaign to bring updates on disease research, care, and advocacy efforts to communities across the U.S.
At each event, PPMD team members and rotating guest speakers provide information on research findings and treatments of importance to DMD patients and their families. Certified Duchenne Care Centers are assisting PPMD in the campaign, as are neuromuscular experts, coordinators with FACES (the PPMD’s parent-led outreach initiative), and representatives of Duchenne Connect, a PPMD-led registry for DMD patients to aid in clinical trials and scientific discovery.
Families are at the center of the PPMD efforts to end Duchenne MD, the nonprofit group said in a press release, and it defined those efforts as accelerating research, promoting advocacy, optimizing care, and providing education. Other communities with planned stops in the tour’s first year are:
- Salt Lake City, Utah, at the University of Utah on May 21
- Chicago, Illinois, at Lurie Children’s Hospital on Aug. 19
- Denver, Colorado, at Children’s Hospital Colorado on Aug, 20
- Kansas City, Missouri, at Children’s Mercy Hospital on Oct. 22
- Durham, North Carolina, at Duke Children’s Hospital on Nov. 19
PPMD members taking part in the tour will also visits local clinics involved in treating DMD patients, with the goal of better understanding how the nonprofit might assist these clinics in expanding their programs to better aid the people they serve. This effort began in March with trips to Lincoln, Nebraska, and the launch of a local FACES group.
At several campaign stops, healthcare professionals may also register for CEU-accredited physical therapist training.
Since its inception in 1994, PPMD has promoted the networking of DMD families with specialists, care providers, and industry stakeholders. Industry partners and resource providers for the ‘Every Single One’ Tour include Kennedy Krieger Institute, the 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.
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