With the goal of connecting with every U.S. family facing a Duchenne muscular dystrophy (DMD) diagnosis, Parent Project Muscular Dystrophy (PPMD) continues its multi-year community effort called the End Duchenne Tour.
At each stop, the non-profit brings updates on research, advocacy and patient care to families in cities nationwide. This year’s tour launched Feb. 2 in Las Vegas, with team members from the Muscular Dystrophy Association (MDA)’s healthcare provider for the area, the McKinnon Medical Group.
The free one-day meetings are designed to promote interaction among Duchenne families, experts in Duchenne research and drug development, and biotech and pharmaceutical industry partners. They also offer opportunities to connect with each area’s Certified Duchenne Care Center. If there’s no such clinic nearby, specialty teams from local clinics share information.
“When my sons were diagnosed with Duchenne over 30 years ago, there was little information and few families I could connect with,” Pat Furlong, PPMD’s founding president and chief executive officer, said in a news release.
“Today, we have an incredible tour that continues to bring a number of scientists, clinicians, pharmaceutical companies and family practitioners together with families in a one-day meeting that is geared specifically for the community hosting us.”
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She said the organization will continue to enhance its tour map, to benefit more Duchenne families nationwide. Representatives of the nearly dozen industry partners that sponsor the tour, travel with PPMD from city to city. Children are welcome, and breakfast and lunch are always provided.
After all, it’s important for Duchenne families to get together, Furlong said.
“When a family faces a Duchenne diagnosis, you feel alone, isolated. PPMD understands the incredible value in connecting with a community that gets you, that gets what your family is going through. The End Duchenne Tour, we hope, is that connection for our families.”
Upcoming tour dates include Omaha, Nebraska, on March 30, and Portland, Maine, on April 27. There will also be stops this fall in Wilmington, Delaware, and Memphis, Tennessee, but dates here are to be announced.
Later this year, PPMD will also offer virtual tour stops, offering families in remote areas opportunities to engage in a meeting online. Dates and locations are being finalized.
Recaps of last year’s eight-city stops may be found here.
In related news, the PPMD has designated Children’s Hospital of The King’s Daughters (CHKD) the organization’s 23rd Certified Duchenne Care Center. Based near Norfolk, Virginia, CHKD offers a distinctive practice setup that allows each subspecialist to practice both independently and as a team, a news release said. Such a program fosters collaboration among providers and patients’ families.
Established as part of PPMD’s Certified Duchenne Care Center Program, the designation recognizes clinics nationwide for outstanding neuromuscular programs. Created in 2014, the program backs standardized, comprehensive care and services for all Duchenne patients.