A Duchenne 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 news, 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 of a very young child or a new diagnosis, please spend time in the Newly Diagnosed section of our site. And let the PPMD family know who you are — we are here for you and want to make sure you have the tools you need to begin this journey. There is a lot of information to absorb and the last thing we want to do is overwhelm you. So check out this section, explore, and when you are ready, do not hesitate to reach out. You are never alone.
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. 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.
Genetic Testing & Interpretation
Decode Duchenne provides free genetic testing, interpretation, and counseling to people with Duchenne or Becker muscular dystrophy who have been unable to access genetic testing due to financial barriers. The program is administered by Parent Project Muscular Dystrophy through The Duchenne Registry, and is supported by Sarepta Therapeutics and PTC Therapeutics.
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. Here you can find some of the favorite resources, products, and organizations of our community members.
As a community resource and online tool, we need you to contribute your experiences and tell your stories to this secure social network of families around the world fighting to end Duchenne.
We have all had frustrations getting healthcare paid for — whether it is getting access and coverage for appointments, procedures, equipment, and/or medications. Coverage is especially difficult when new medicines or procedures are recommended. To make this process easier, PPMD has assembled resources that will help families and medical providers at each stage of the healthcare access process.
Online interactions are great, but nothing can replace in-person connections with other families living with Duchenne. PPMD has local Connect groups all over the country for this very reason.
Previously known as FACES, these groups serve many functions, but primarily exist to help you along this journey. Reaching out to your local group will let them know that you are there. Maybe you don’t want anything, or maybe you just want to “listen” for awhile — that’s ok.
No one needs to go through this experience alone. Finding one or two families to connect with will help you to know that there is hope and that you have support whenever you need it.
Each year nearly 500 families from around the world gather at PPMD’s Annual Conference to learn the latest progress in the fight to end Duchenne and connect with leading experts. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than that, it is a way for families affected by Duchenne to connect with each other. To build support networks. To realize no one is on their own in the fight to end Duchenne.
End Duchenne Tour
Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care to families across the country, featuring a roster of leading experts in the Duchenne space. This is your opportunity to interact with vetted leaders in Duchenne, connect with local families on the same journey, and, when possible, explore your area Certified Duchenne Care Center. All meetings are free and kids are welcome to attend and participate in PPMD’s Kids Track.
Explore Research & Clinical Trials
Duchenne research continues to progress, with multiple therapies in clinical trial. Stay up-to-date on the latest research and learn about actively recruiting clinical trials and studies.
Join The Duchenne Registry
If you have Duchenne or care for someone living with Duchenne, join The Duchenne Registry to share your data. The information you give advances research and treatments for Duchenne, and helps you learn about and enroll in actively recruiting clinical trials and research studies.
Become an Advocate
Join the fight to end Duchenne 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.
We are only as strong as our community. Join the fight, and together, we will end Duchenne.
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. 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 raise funds for PPMD’s essential work along the way).
DIY Fundraising to End Duchenne
Do it your way! PPMD’s mission is to end Duchenne 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 end Duchenne. 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!