Pittsburgh, PA, December 2, 2023 – Paula R. Clemens, MD – a professor of neurology at the University of Pittsburgh – hosted a Becker Education and Engagement Day (BEED) at the University of Pittsburgh. BEED is an initiative developed by Becker advocates, clinical sites, advocacy groups and researchers aiming to unite the Becker community. The University of Pittsburgh was one of four locations in the United States on December 2 to host a BEED.
According to the Muscular Dystrophy Association, Becker muscular dystrophy (BMD) is, "...one of nine types of muscular dystrophies, a group of genetic, degenerative diseases primarily affecting voluntary muscles. BMD belongs to a group of dystrophinopathies including Duchenne muscular dystrophy (DMD) and an intermediate form between DMD and BMD". BMD affects the muscles of the hips, pelvic area, thighs, and shoulders, as well as the heart.
BEED is a free, educational event that presents on topics relevant to the Becker community, provides the latest research updates and creates an opportunity for those impacted by Becker to connect in-person. The agenda for Dr. Clemens’s BEED was comprehensive and included:
- Becker Muscular Dystrophy Overview
- Becker Muscular Dystrophy Care Considerations
- Cardiac and Respiratory Health
- Muscle Health, Physical Therapy and Exercise
- Becker Resource Toolkit
- Living with Becker Muscular Dystrophy
- Becker Clinical Trials Overview
- Meeting the Becker Community’s Needs
- Lunch Reception & Closing Reception
Event organizers classified their BEED as a success, stating that patients were exceptionally satisfied with the seven-hour event. Patients commented on a survey that:
“This is finally the first time in thirty years I’m in the room with others”
“As a younger person with Becker it’s special to hear from people who are twice or three-times my age and are OK”
“I hope more meetings and forums like this can de done. We’ve been asking for this for a long time, and there’s been nothing until now”
“We lump diseases together sometimes, but Becker has unique needs compared to Duchenne. Regarding BEED, want to shy away from the word “day” and rephrase it to “Becker Engagement Day Today and Forever”
Dr. Clemens’s clinical and research interests focus on genetic myopathies; her translational research aims to identify and test treatments for genetic muscle conditions such as muscular dystrophy and late-onset Pompe disease. She participates and directs Phase II and III clinical trials.
