Last month, families from around the world came together for PPMD Together: Virtual Edition. This unique virtual gathering provided families a space to connect, share their experiences, and find support from one another as they navigate the daily challenges of living with Duchenne and Becker muscular dystrophy.

Following on the heels of two successful in-person PPMD Together meetings, which took place in Cincinnati in April and Seattle in September, this virtual edition focused on understanding and navigating behaviors that can impact daily life for both individuals with Duchenne and their families.

Dr. Natalie Truba, PhD, a psychologist from Nationwide Children’s Hospital, discussed the connection between dystrophin in the brain and why individuals with Duchenne and Becker may experience certain behaviors. Dr. Truba shared insights on cognitive and behavioral issues commonly reported by families, such as learning difficulties, sensory sensitivities, sleep disruptions, and attention challenges. She emphasized that the impact of Duchenne goes far beyond muscle weakness, including the brain, which affects many aspects of daily life and well-being.

Jill Castle, M.Ed., spoke on Positive Behavior Support strategies, helping families understand how to address challenging behaviors. She focused on identifying the function of behaviors and teaching alternative, positive responses. By reinforcing new behaviors with rewards, families can create a more supportive and effective environment for their children.

In addition to behavioral strategies, Denise Gruender, B.S., introduced practical tools to help families establish routines and boundaries. Tools like a rule wall, schedule stick and visual timer can help children with Duchenne & Becker manage transitions, understand time, and feel more in control of their daily activities, reducing stress for both children and parents.

Attendees then had a chance to break out into age-based groups to allow for personalized questions, tailored advice, and to share experiences with others who were navigating similar challenges

PPMD Together events provide a sense of community and reassurance that families are not alone in this journey. Look for more information in the new year about our 2025 PPMD Together meetings.