While no one asks to be part of this community, and entering the world of Duchenne and Becker can be overwhelming, you are not alone. During his keynote session at PPMD’s 30th Annual Conference, Brandon Kozar, PhysD, MBA, from Nationwide Children’s Hospital, emphasized the importance of inclusion and feeling a sense of belonging for individuals and families living with Duchenne and Becker. He noted the many benefits of the PPMD community, highlighting opportunities for learning and education, as well as connecting with other families that understand the diagnosis, are committed to ending Duchenne and Becker, and can provide social and emotional support.

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What Really Matters

Taking care of yourself is a critical component of taking care of your family. This was one of the leading takeaways from the “What Really Matters: A Town Hall on Life, Living, and Hope” panel session during PPMD’s 30th Annual Conference. The panel featured Duchenne parents, each of whom shared their personal experiences and reflected on what really matters for them, their children living with Duchenne, and their families. Topics included living purposefully and joyfully, building community, asking for and receiving help, the human side of clinical trials, mental health, and finding hope.

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Living Life to the Fullest

PPMD’s Adult Advisory Committee (PAAC) helps to improve quality of life for teens and adults living with Duchenne and Becker. The PAAC is made up of almost 50 experts—individuals living with Duchenne and Becker—ranging in age from 18-64. During the closing session of PPMD’s 30th Annual Conference, a panel of PAAC members received a standing ovation after sharing their expert knowledge and answering questions from the audience about a variety of topics, including having a sense of humor, supporting your child living with Duchenne and Becker, and living life to the fullest.

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Resources for Connecting With the Community

Finding families to connect with can serve as a reminder that there is hope and support whenever you need it. PPMD’s family outreach program, PPMD Connect, brings together families in their local areas, and now has 30+ groups across the country. Learn more about PPMD Connect and find your local group here.

PPMD Connect

PPMD’s virtual socials offer opportunities to connect with fellow members of the Duchenne and Becker community, discuss important topics, and learn from one another. Learn more about virtual gatherings for dads, siblings, teens and adults (PAAC), tweens, and grandparents on our website.

More Ways to Connect

PPMD Lighthouse Workshops provide a safe and supportive space to build stronger connections and deeper insights about life and identity that go beyond diagnosis and management. Through small group facilitated meetings, these virtual workshops aim to foster conversation, connectivity, and well-being. Learn more about Lighthouse Workshops here.

PPMD Lighthouse Workshops

Being able to connect with other families who have been through this Duchenne/Becker journey before can be extremely helpful and comforting, knowing you are not alone. The Connect With the Community appointments through the PPMD For You program offers a chance to meet with PPMD’s community engagement coordinator to get connected with a family who lives nearby or who has a child of similar age to yours.

PPMD For You