Parent Project Muscular Dystrophy Hosts Virtual Annual Conference Français

Leading Duchenne Organization Will Mark Their 26th Conference by Presenting Four Days Worth of Research & Care Updates

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Parent Project Muscular Dystrophy (PPMD)

Jul 20, 2020, 11:53 ET

HACKENSACK, N.J., July 20, 2020 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will mark their 26^th anniversary this week with the start of PPMD's Virtual Annual Conference on Wednesday, July 22, 2020 at 6pm eastern. Originally scheduled to take place in Scottsdale, Arizona, the decision was made during the spring to host a virtual meeting due to the COVID-19 pandemic. There is no cost to attend and, with over 1,000 participants already registered, PPMD is hopeful that the virtual components will help make the meeting even more accessible to families globally.

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.

Furlong is excited about this year's Conference and believes the Duchenne community is at a pivotal moment. "2020 has been an extraordinary year and so much progress has been made in our community since last year's conference. However, the COVID-19 pandemic has created complications and road blocks we never could have imagined. The fight to end Duchenne doesn't slow down because of a virus though. Our community has rallied together to ensure that this momentum we have worked so hard for won't slow down. This year's Virtual Annual Conference will be different – like so many things are these days. But I believe it will unite and empower us in a way we could have never imagined."

Since their first meeting in 1994, 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. The 2020 PPMD Virtual Annual Conference will feature presentations on:

Gene therapy
Current clinical trials
Important care topics
Quality of life issues
Cardiac implications in Duchenne
Carrier health information
Preclinical research discussions
And a look ahead at promising research strategies and other ways to improve the Duchenne landscape, even in the midst of the ongoing health crisis.

In addition to conference presentations, panel discussions, and Q&A sessions, PPMD's 2020 Virtual Annual Conference will include:

Dedicated sessions, both social and educational, for newly diagnosed families
Dedicated sessions for teens and adults living with Duchenne
The ability to schedule one on one sessions with Certified Genetic Counselors from The Duchenne Registry, a Child Behavioral Educational Specialist, and Physical Therapists
A robust online poster session providing information on research related to Duchenne
And social activities for moms, dads, grandparents, siblings, and, of course, 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 will also celebrate recent Change It Champion Award-winner Claudia Senesac, PT, PhD, PCS, from University of Florida, in recognition of her years of commitment and compassion for the Duchenne community and her leadership in ensuring physical therapy is at the heart of daily care for our families.

Normally presented during the organization's in-person Annual Conference, Furlong and the PPMD team surprised Senesac on a Zoom call last week to present the award virtually. Senesac, who was moved to tears, said: "I am so honored to be recognized by such an incredible organization for my contribution to Duchenne care through physical therapy. In my experience, I have found that we have to be flexible and inherently resilient as care providers. Parents in the Duchenne community can feel overwhelmed by this diagnosis. I want to be a role model for the people I come into contact with, especially during these unpredictable times and with an unpredictable disease. Thank you Pat and the entire PPMD team for this honor."

Furlong, who has known Senesac for years, said: "Claudia has spent countless hours working with patients and clinicians, as well as training the next generation of physical therapists. Recently, she helped create PPMD's Physical Therapy Video Library, a comprehensive guide for families practicing PT at home. The Change It Champion Award has been given to world-renowned researchers and scientists, physicians, members of the Senate, of Congress, and parents who not only join the fight to end Duchenne, but help lead. Claudia rightly deserves a place among these heroes of our community."

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

It is not too late to attend this week's meeting. To register for free for the 2020 Virtual Annual Conference, click here. To learn more about PPMD, please visit our website.

About Parent Project Muscular Dystrophy

Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne—our mission is to end Duchenne.

We demand optimal care standards and strive to 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 three 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 and follow PPMD on Facebook, Twitter, Instagram, and YouTube.

SOURCE Parent Project Muscular Dystrophy (PPMD)