On Saturday, Duchenne community members from six states gathered together at the beautiful facilities at Kennedy Krieger in Baltimore – one of PPMD’s Certified Duchenne Care Centers – to hear the latest developments on clinical trials, clinical care practices, carrier programs, legislative and regulatory efforts, IEPs and school advocacy, physical therapy, DuchenneConnect, genetic testing – and much more.
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, as you have probably read, 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 brings updates on research, advocacy, and care to half a dozen cities in 2016. Considering the incredibly positive feedback from participants at our first stop in Baltimore, our Every Single [One] Tour is off to a great start!
Saturday’s meeting opened to a full house. Those gathered included families whose children were newly diagnosed – and many families with young adult sons. We even had great representation (and participation) from a number of adults with Duchenne who attended as well! At one point during the physical therapy presentation, presented by Nikia Stinson and Carly Stock, they asked the audience to indicate which families in the room had children 14 and under – and which ones had children with Duchenne over 14; it was a completely even split.
Physical therapy presentation
We couldn’t have asked for a more enthusiastic and passionate group of participants! Every family had opportunities to spend time with the presenters in both the general sessions and one on one, and the meeting format allowed for a tone of open exchange.
Following the robust morning session in which Dr. Kathryn Wagner presented a wonderful research update, the day continued with clinical trial presentations from several Duchenne industry sponsors. Another impromptu and candid discussion arose among the entire group about the complexities involved in selecting clinical trials.
Ann Lucas, PPMD
PPMD’s Ann Lucas discussed the importance of the DuchenneConnect registry and afforded families the opportunity to begin the registration process or to update their current profiles – many families took advantage of this focused time to do just that.
Mike Gaglianone, Duchenne Dad & Run For Our Sons Runner
Mike Gaglianone also used the opportunity to share his 15 years of experience with PPMD’s Run For Our Sons program and encouraged everyone to consider just how easy it is to not only fundraise, but also to actually run a marathon… With a few attendees that signed up on the spot to join the team at the Baltimore Running Festival this October, we’ll soon find out just how easy it is!
Pat Furlong, PPMD
Similarly, during the afternoon Pat Furlong shared information about PPMD’s new carrier programs which facilitated a terrific discussion among participants about the considerations involved in having sisters screened for carrier status and how – and when – to approach the conversation.
For those who are local to the area, you may know that Baltimore has gone through its share of hometown slogans. “Charm City”, “The city that reads”, “BaltiMORE than you know”, and now “Home of the Star Spangled Banner.” After this weekend, I would propose yet another… “Birthplace of the #EverySingleOne Tour, Hon!”
Thank you to everyone who helped to make our Every Single [One] Tour launch such a success. To all of our presenters and all of the extraordinary clinical providers at Kennedy Krieger, but most especially to Dr. Kathryn Wagner, to KKI’s Clinic Coordinator Angie Lasseth, and to our amazing Duchenne community members who shared their Saturday – and their journey – with us.
PPMD is fighting with you on every front until we #EndDuchenne for #EverySingleOne.
Thank you to our partners
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.
Visit PPMD's Annual Connect Conference & Meetings page to view our 2016 Every Single [One] Tour Schedule.