Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), celebrates its 26 anniversary with the start of PPMD’s Virtual Annual Conference on Wednesday, July 22, 2020, at 6pm eastern.
Originally scheduled to take place in Scottsdale, Ariz, the decision was made during the spring to host a virtual meeting due to the COVID-19 pandemic. To register for the free conference, visit Parent Project Muscular Dystrophy.
PPMD, led by President and CEO Pat Furlong, was founded in 1994 by a group of parents and grandparents and is focused on ending Duchenne, according to a media release.
“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.”
— PPMD President and CEO Pat Furlong
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 families, the release continues.
Normally presented during the organization’s in-person Annual Conference, Furlong and the PPMD team surprised Senesac on a Zoom call recently to present the award virtually.
“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.”
— Change It Champion Award-winner Claudia Senesac, PT, PhD, PCS
“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.”
— Pat Furlong
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]