Milestone event brings together record-breaking 1,300 plus families, physicians, researchers, caregivers, industry partners, and those living with Duchenne and Becker in person and virtually to connect, share information, and learn the latest progress in the fight for every future.
ORLANDO, Fla., June 24, 2024 /PRNewswire/ — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will host its 30th Annual Conference in Orlando, Florida, June 27–29. Each year, the Duchenne and Becker community gathers to learn about the latest progress in the fight to end Duchenne and connect with leading experts. Now in its 30th year, PPMD’s Annual Conference returns to Orlando, the location of the organization’s very first Annual Conference in 1994, to engage more of the Duchenne and Becker community than ever before.
PPMD expects a record-breaking 1,300 plus families, researchers, clinicians, and industry partners from all over the world for three days of informative and interactive sessions featuring the latest news in research, clinical trials, approved and emerging therapies, care initiatives, quality of life issues, and more. Before the Conference officially kicks off, PPMD will host a Becker Care Professional Meeting, June 26–27, aimed at initiating discussions within the healthcare professional community regarding the creation of consensus-based standards of care for Becker muscular dystrophy.
Founded in 1994 by a group of parents and grandparents, and led by Founding President and CEO Pat Furlong, PPMD is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne. Since its first meeting 30 years ago, PPMD has convened families with researchers, clinicians, industry partners, advocacy organizations, and most importantly, people with Duchenne and Becker and their families at the largest Duchenne-specific conference held in the U.S.
Furlong is excited about this year’s milestone Conference and looks forward to bringing the Duchenne and Becker community together: “From PPMD’s first Annual Conference 30 years ago to our momentous return to Orlando this week, this community’s unwavering commitment, passion, and resilience have been the driving force behind our fight for every future. We have faced challenges and celebrated victories and we have motivation to keep progressing. PPMD’s 30th Annual Conference will be filled with a variety of interactive experiences to spark conversation, foster new and familiar relationships, learn from one another, and continue to drive change in the fight to end Duchenne.”
PPMD is grateful to all of our industry sponsors, whose support helps make the Annual Conference possible, especially our 30th Anniversary Star sponsor Sarepta Therapeutics, our Platinum sponsors Catalyst Pharmaceuticals and Pfizer, Inc., and our Gold sponsors Avidity Biosciences, Dyne Therapeutics, Edgewise Therapeutics, ITF Therapeutics, NS Pharma, Inc., Upsher-Smith Laboratories, and Wave Life Sciences. For sponsorship opportunities, please click here.
PPMD’s 30th Annual Conference agenda will feature stories from multiple keynote speakers, and interactive discussion panels addressing comprehensive, multi-dimensional approaches to care for Duchenne and Becker. Unique topics to this year’s conference include:
- Approved therapies in Duchenne, including presentations on the recently expanded label for ELEVIDYS and newly-approved therapies AGAMREE and DUVYZAT, as well as a clinician panel discussion on the eight currently approved therapies.
- Becker-specific breakout sessions, including discussions on neuromuscular care, cardiology, genetic counseling, and physical therapy, as well as industry updates about emerging therapies for Becker.
- What we have learned over time about outcome measures, including Functional Reach, Stride Velocity, Dynamic Visual Acuity (DVA), and Northstar and Performance of Upper Limb (PUL).
- Cardiac, neuromuscular, and adolescent care for carriers, as well as physical therapy implications and research in progress in the field of Duchenne carriers.
- Unique experiences and perspectives on life, living, and hope, as well as daily life care such as sleep and behavior; decision making around steroids, weight, and nutrition; pain; exercise; social connection; and more.
This year’s Conference will also feature dedicated updates from more than 20 partners currently in clinical trials, with panels including:
- Strategies to restore dystrophin
- The current and evolving landscape of gene therapy
- Approaches to alter disease progression
- PPMD’s role in moving the needle in clinical research
A variety of breakout sessions and social gatherings will also be offered during PPMD’s 30th Annual Conference, encouraging attendees to create their own, unique experiences, in-person or virtually, by participating in:
- Special programming for Newly Diagnosed Families
- A dedicated track for Teens and Adults with Duchenne/Becker
- Expanded Sibs Track sessions, offering a safe place for siblings to be together, talk, and open up about topics that they face
- Breakout sessions according to age, covering multiple aspects of care
- One-on-one private appointments with Physical Therapists, Genetic Counselors, and behavior, speech, and language experts to help provide guidance on every family’s unique needs
- Small group Lighthouse Mini-Sessions focused on self-care, effective communication, asking for help, and staying connected and finding belonging
- A Build Your Own Care Binder station for families to create personalized binders filled with important information regarding Duchenne/Becker care to help navigate routine care and emergencies
- A robust Resource Fair enabling resource providers and the community to connect about practical services, research and more
- A meet and greet for diverse families in Duchenne to share their unique experiences and foster connection
- Social activities for moms, dads, grandparents, siblings, and, of course, tweens, teens, and adults with Duchenne and Becker
- Fun and interactive sessions for kids
Ahead of the Conference, all registered attendees were given access to PPMD’s online Conference Hub & App to stream sessions and personalize their agenda and Conference experience. This year’s Hub & App offers an enhanced experience for both in-person and virtual attendees, allowing for engagement with exhibitors and increased interaction during live sessions. AI-powered live translation will also be available for main sessions in dozens of languages.
It is not too late to attend this year’s meeting, in-person or virtually. To register for PPMD’s 30th Annual Conference, click here. To learn more about PPMD, please visit our website.
SOURCE Parent Project Muscular Dystrophy (PPMD)
