Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will host its 2022 Annual Conference in Scottsdale, Arizona, June 23-26.
Each year, the Duchenne community gathers to learn about the latest progress in the fight to end Duchenne and connect with leading experts. Now in its 28th year, after two years of virtual conferences, PPMD is launching an official hybrid format featuring both in-person and virtual participation options to engage more of the Duchenne community than ever before.
PPMD expects over 700 families, researchers, clinicians, and industry partners from all over the world for four days of informative and interactive sessions featuring the latest news in research, clinical trials, emerging therapies, care initiatives, quality of life issues, and more.
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 their first meeting 28 years ago, PPMD has convened families with researchers, clinicians, industry partners, advocacy organizations, and most importantly, people with Duchenne and their families at the largest Duchenne-specific conference held in the U.S.
Furlong is excited about this year’s Conference and looks forward to reuniting the Duchenne community in person: “Over the past two years, we have found ourselves stronger in many ways, continuing onward no matter the obstacles in our way. I have seen incredible dedication, flexibility, creativity, compassion, and perseverance from this community, and we’ve emerged even stronger on the other side. This year’s Conference will be a reunion, 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.”
Parent Project Muscular Dystrophy’s 2022 Annual Conference agenda will feature stories from multiple keynote speakers, and interactive discussion panels addressing comprehensive, multi-dimensional approaches to care for Duchenne. Unique topics to this year’s conference:
- Cardiac care in Duchenne, including The Duchenne Cardiac Care Town Hall, featuring updates around monitoring and imaging, current medical management practices, and the potential impact from gene therapy, as well as an opportunity for the community to share their concerns and priorities.
- Becker-specific care and research panels, including discussions on natural history studies and emerging therapies, as clinical trial opportunities begin to expand to include those with Becker muscular dystrophy.
- Emergency care featuring a panel of experts to discuss potential emergency scenarios and how families can best advocate for themselves and their child.
- The impacts of dystrophin on the brain and implications in everyday life, including a focus on learning and behavior, coordination of care, school planning, and appropriate modifications to facilitate success at school, home, or in the workplace.
- Unique experiences and perspectives on the importance of fostering independence to grow and thrive, for both caregivers and individuals living with Duchenne and Becker.
Three industry partners will present in late-breaking news sessions to share newly released data or program updates: Capricor Therapeutics, Italfarmaco, and PTC Therapeutics. In addition to these presentations, this year’s Conference will feature dedicated updates from 20 partners currently in clinical trials, with panels including:
- Gene therapy approaches to replace or restore dystrophin
- Strategies for mitigating inflammation and fibrosis
- Restoring dystrophin via exon skipping strategies
- Novel approaches for combating Duchenne
- Emerging therapies for Becker muscular dystrophy
A variety of breakout sessions and social gatherings will also be offered during PPMD’s 2022 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, including sessions as part of PPMD’s Power of Us Summit Series
- 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 Behavioral Therapists, Physical Therapists, Genetic Counselors, and Respiratory Therapists to help provide guidance on every family’s unique needs
- A robust Resource Fair and Scientific Poster Session enabling resource providers and the community to connect about practical services, research and more
- The first-ever Knight Hacks Community Poster Contest, showcasing the ingenuity of Duchenne families in memory of a beloved community member
- Social activities for moms, dads, grandparents, siblings, and, of course, tweens, teens, and adults with Duchenne
- Fun and interactive sessions for kids
“Every year, PPMD’s Annual Conference grows. The number of attendees increases and the breadth of our agenda expands. This year’s Conference is perhaps our most exciting to date, with an incredible number of presentations focused on emerging therapies and discussions around care and quality of life issues that we know more about today than ever before,” says Furlong. “With such an incredibly robust agenda, I am particularly proud that this will be our first Annual Conference featuring an official hybrid format. Over the past two years, we have learned the power of our reach when travel barriers are eliminated and embrace this incredible opportunity to connect with all families on this shared Duchenne journey, whether they are near or far.”
Ahead of the Conference, all registered attendees were given access to Parent Project Muscular Dystrophy’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 increased interaction during live sessions, including breakouts.
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]