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Parent Project Muscular Dystrophy Hosts 2021 Virtual Annual Conference

Leading Duchenne Organization Will Mark Their 27th Conference by Presenting Four Days Worth of Research & Care Updates, Including Late-Breaking New Data Presentations


News provided by

Parent Project Muscular Dystrophy (PPMD)

Jun 21, 2021, 12:30 ET

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HACKENSACK, N.J., June 21, 2021 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will host their 2021 Virtual Annual Conference, June 23-26. Each year, the Duchenne community gathers to learn the latest progress in the fight to end Duchenne and connect with leading experts. Now in its 27th year (and second virtual year), PPMD expects close to 2,000 attendees for four days of informative and interactive sessions. Five late-breaking news sessions have been announced, featuring updates from industry partners who will be presenting newly released data to the Duchenne community for the first time.

Founded in 1994 by a group of parents and grandparents, and led by 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 27 years ago, PPMD has been convening families with researchers, clinicians, industry partners, advocacy organizations, and most importantly, people with Duchenne and their families at the largest Duchenne-specific conference in the U.S.

Furlong is excited about this year's Conference and grateful that Duchenne the community is there for one another no matter the distance. "A year ago, when we pivoted our Annual Conference to a virtual format, we thought it would be a one-time adventure, and that by 2021 we'd be back together again. But as we know from our experiences living with Duchenne, life is unpredictable and rarely goes as planned. We also know, from our experiences as part of this community, how to make the best of things. And so we are excited to bring the community an even more robust Virtual Annual Conference experience this year, full of new, interactive additions to our program and exciting updates the community will be hearing for the first time."

The 2021 PPMD Virtual Annual Conference will feature presentations on important care topics and quality of life issues, in-depth interviews with key opinion leaders, and research panel discussions organized by therapeutic focus:

  • Dystrophin restoration
  • Protecting the muscle
  • Gene therapy
  • Reducing inflammation
  • Improving the heart and mitochondria
  • Gene editing
  • Pre-clinical gene therapy
  • Next-gen exon skipping

In addition to featuring research presentations from 20 industry partners currently in clinical trials, the Duchenne community will also hear updates from partners presenting newly released data to the Duchenne community for the first time. Partners that will be presenting new data to the community are: NS Pharma, PTC Therapeutics, FibroGen, Italfarmaco and ReveraGen (partnership with Santhera).

A variety of breakout sessions and social gatherings will also be offered during PPMD's 2021 Virtual Annual Conference, encouraging attendees to create their own, unique virtual experience by participating in:

  • Dedicated sessions for newly diagnosed families, siblings, and teens and adults living with Duchenne
  • Fun and interactive sessions for kids
  • Breakout sessions according to age, covering multiple aspects of care
  • One-on-one and small groups sessions with Certified Genetic Counselors from The Duchenne Registry, an Occupational Therapist, and Physical Therapists
  • A robust online resource fair enabling resource providers and the community to connect about practical services, equipment, and more
  • A narrated poster session providing information on research related to Duchenne
  • Social activities for moms, dads, grandparents, siblings, and, of course, tweens, teens and adults with Duchenne

Ahead of the Conference, all registered attendees were given access to PPMD's Virtual Annual Conference Hub, featuring an On-Demand Library of pre-recorded research presentations, including clinical trial overviews and details about specific therapies. This allows families attending the Conference to learn basic Duchenne information, as well as ask questions ahead of time so that presenters know what is most important to the community.

PPMD is grateful to all of our industry sponsors, whose support helps make the Annual Conference possible, especially our Elite sponsor PTC Therapeutics and our Platinum sponsors FibroGen, Inc., NS Pharma, Inc., Pfizer, Inc., Sarepta Therapeutics and Wafra, Inc. For sponsorship opportunities, please click here.

It is not too late to attend this week's meeting. To register for the 2021 Virtual Annual Conference, click here. To learn more about PPMD, please visit our website.

ABOUT PARENT PROJECT MUSCULAR DYSTROPHY:

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won five FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube. 

SOURCE Parent Project Muscular Dystrophy (PPMD)

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