Parent Project Muscular Dystrophy

🗓️ Have you taken a look at PPMD’s calendar of upcoming virtual socials?

Find connection, belonging, and others who understand your experiences, because we know that access to community changes lives.

We’re hosting virtual gatherings for carriers, grandparents and extended family members, dads, tweens, and recently diagnosed families in the coming weeks, and would love to see you there! Learn more: https://www.parentprojectmd.org/events/

How do you ask for help when life as a Duchenne or Becker caregiver feels nonstop?

🎙️ In the latest episode of our Living Duchenne podcast, host Rachel Poysky sits down with Clare Perin and Susan Caldwell, two moms and caregivers of kids living with Duchenne, to talk honestly about clinical trial experiences, making space for yourself, structuring the day, and navigating the ever-changing needs of a Duchenne family.

🎧 Take a listen to Season 8 Episode 2, now available on Apple Podcasts, Spotify, or wherever you get your podcasts! https://www.parentprojectmd.org/care/living-duchenne-podcast/season-8-caregiver-burnout/

Access to a seat at the table can create meaningful change for individuals living with Duchenne and Becker and their families.

At RAPS Convergence 2026 this week with Regulatory Affairs Professionals Society (RAPS), PPMD was honored with this year’s Patient-Centered Health Award and participated in two panel sessions, sharing the perspective of the and community in conversations shaping the future of rare disease therapeutic development and regulation.

Read more about PPMD’s participation and the power of the patient voice: https://www.parentprojectmd.org/ppmd-celebrates-patient-centered-advocacy-at-raps-convergence-2026/

PPMD Celebrates Patient-Centered Advocacy at RAPS Convergence 2026 Earlier this week, PPMD joined global regulatory professionals, patient advocates, industry leaders, and others from across the healthcare community at RAPS Convergence 2026 in Charlotte, North Carolina. This year marked the 50th anniversary of the...

The Becker community is coming together again this October 17-18 for Becker Education & Engagement Day (BEED) 💙

From Becker care and research updates to physical therapy, navigating daily life, and connecting with others in the community, offers opportunities to learn and engage at every stage of the Becker journey.

Registration for the two-day event is FREE and we'll be in FIVE locations across the US: Portland, Sacramento, St. Louis, Orlando, and Washington, DC.

https://beckereducationandengagement.com/

For the Duchenne and Becker community, access can mean many different things. For Duchenne parent Suzanne, it means possibility—the ability for her son to participate fully in life, live with fewer barriers, and have access to potential therapies that may create more possibilities for the future.

We’re continuing to share perspectives from across the and community to show the many ways access changes lives. What does access mean to you?

Following World Duchenne Awareness Day, we’re continuing to share perspectives from across the and community to show the many ways access changes lives.

For Devin, it means having the same opportunities as everyone else—and the support needed to live as independently as possible.

What does access mean to you?

This Sunday, September 13th, is Grandparents Day! ❤️

This year, honor a grandparent who has made a difference in your life with a tribute gift to PPMD. Whether your gift is made in their honor or in their memory, it is a meaningful way to celebrate the love they have given and carry that love forward.

Make a gift and send a special eCard today: https://donate.parentprojectmd.org/campaign/839371/donate

🎙️ We're excited to kick off Season 8 of our Living Duchenne podcast! Season 8 begins with a candid conversation about caregiver burnout and the importance of making space for yourself.

Host Rachel Poysky sits down with mom Joanna Johnson to talk about caregiving while raising a young adult with Duchenne. Together, they explore recognizing the signs of burnout, setting boundaries and limits with your family, and getting clear on what you need that is 100% for you.

🎧 Take a listen to Season 8 Episode 1: Fostering Dialogue, now available on Apple Podcasts, Spotify, or wherever you get your podcasts!

https://www.parentprojectmd.org/care/living-duchenne-podcast/season-8-caregiver-burnout/

Following World Duchenne Awareness Day, we're continuing to highlight ways access changes lives for those living with and . This includes access to the right care and resources.

We’re proud to share that PPMD is a recipient of Entrada Therapeutics, Inc.'s 2026 DREAMS Grant!

This year’s grant will help PPMD turn learnings from our national Care Landscape Assessment into action—expanding access to coordinated, specialized Duchenne care, with a focus on adults and rural communities.

By investing in adult care infrastructure, multilingual resources, provider education and community engagement, this project will establish lasting resources that continue to improve equitable access over time.

Thank you to Entrada Therapeutics for supporting this important work.

https://ir.entradatx.com/news-releases/news-release-details/entrada-therapeutics-announces-recipients-fourth-annual-dreams