For Families

A Duchenne or Becker diagnosis can leave families feeling isolated, overwhelmed, and confused. The most important thing for you to remember is that you are not alone. PPMD is here to connect you to care, resources, advancements in research, and—most importantly—each other.

Even if you have been on this journey for years, it may be worth revisiting the Newly Diagnosed and other sections for resources that could help assist you and your family at various points along the way.

Now, more than ever, there is reason to hope – hope for therapies, hope for research, hope for care, hope for a cure. We hope that the resources and guidance that we offer here might be helpful for each family member along this journey.

For Newly Diagnosed

If you are the parent or loved one of someone who was recently diagnosed with Duchenne or Becker, please spend time in the Newly Diagnosed section of our site. There is a lot of information to absorb, but know that you do not have to go through this alone. Our goal is to provide support, tools and resources as you navigate this new world. Register with PPMD so you can stay connected and we answer any questions you may have.

Nurses Engaging In Team Meeting At Nursing Home

Assembling a Care Team

It is extremely important that you work with a comprehensive, multidisciplinary neuromuscular team that has experience and expertise managing all aspects of patients and families living with Duchenne or Becker. This comprehensive team will allow each specialist to give input into the best and most appropriate care for you and your child.

Certified Duchenne Care Centers

PPMD is dedicated to ensuring that all families have access to comprehensive, optimal Duchenne care. For this reason, we have started the Certified Duchenne Care Center Program, creating a network of sites capable of providing the highest level of comprehensive Duchenne care. Find out if there is a site near you and learn more about what goes into our certification process.

Medical Or Research Scientist Or Doctor Using Looking At A Test

Genetic Testing

Decode Duchenne provides free genetic testing to people with Duchenne or Becker muscular dystrophy and eligible family members. The program is administered by Parent Project Muscular Dystrophy, and is supported by industry sponsors.

Community Resource Center

The PPMD Community Resource Center is meant to be a one-stop online resource for every child, adult, and family living with Duchenne or Becker. Here you can find some of the favorite local resources, practical products, and helpful organizations of our community members.

View All Community Resources

Connect with the Community

Receiving this diagnosis can be overwhelming but you do not have to navigate this journey alone. Connecting with others who understand your experience can offer support, encouragement, practical advice and a sense of belonging. PPMD offers many different avenues to connect with the community, whether it’s through our in person events like Annual Conference or regional PPMD Together, connecting with local families through PPMD Connect groups, or attending virtual socials. Wherever you are in this process, there is always an opportunity to find connection and be surrounded by a supportive community.

Explore Research & Clinical Trials

Duchenne research continues to progress, with multiple therapies in clinical trials. Stay up-to-date on the latest research and learn about actively recruiting clinical trials and studies.

Join The Duchenne Registry

If you have or are caring for someone with Duchenne or Becker, or are a carrier of dystrophinopathy, join The Duchenne Registry to share your data. The information you give advances research and treatments for everyone on the dystrophinopathy spectrum, and helps you learn about and enroll in actively recruiting clinical trials and research studies.

Become an Advocate

Join the fight to end Duchenne and Becker by raising your voice in Washington at PPMD’s Advocacy Conference. We also encourage you to sign up to receive Action Alerts, so that you can stay up-to-date with the latest advocacy news, as well as reminders to contact legislators on the most pressing issues.

Fundraise with a Purpose

Every fundraiser, big or small, helps drive research, improves care and supports families living with Duchenne and Becker. When you fundraise with PPMD, you’re joining a community working together to create a better future for everyone. Join the fight, and together, we will end Duchenne and Becker.

Race To End Duchenne

Participate in a Race to End Duchenne near you to join hundreds of individuals and families around the country raising money for Duchenne & Becker care and research. You can also show your commitment by supporting or sponsoring a participant. Host a Race to End Duchenne .1K—a run that most anyone can do, in any space. It’s a great opportunity to educate a new community about Duchenne and Becker (and raise funds for PPMD’s essential work along the way).

DIY Fundraising

Do it your way! PPMD’s mission is to end Duchenne and Becker but we need YOU! Have a great idea for a fundraiser? Looking for ways to raise money to support research? You can do just about anything to raise funds to support PPMD’s mission to create a better future for everyone living with Duchenne and Becker and PPMD is here to help you every step of the way.

Coach To Cure MD

For over a decade, PPMD and college football teams have partnered to raise money and awareness through Coach to Cure MD. This September tradition has multiple ways you and your family can participate on game day — and have a great time doing it. Find out how you can get in the game and join the PPMD team!

Join Our Mailing List