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.
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SOURCE Parent Project Muscular Dystrophy (PPMD)