June 6, 2020 / Community

Resources for Adjusting to a New Diagnosis of Duchenne

No one is prepared to receive the diagnosis of Duchenne. Most often, parents and caregivers have no prior knowledge of the disease, and information online can be very overwhelming. PPMD has developed a wealth of resources to walk your family through this uncertain time, and provide you with a sense of stability and support.

Recently, PPMD invited families in our community to discuss their experience after receiving a Duchenne diagnosis. We believe by sharing the stories of our community, families can connect, heal, and find empowerment to navigate their own Duchenne journey.

Watch the Webinar

PPMD’s Virtual Newly Diagnosed Program

Each year at PPMD’s Annual Conference, we host a Newly Diagnosed Program with goals of connecting you with other families on this journey, in addition to equipping you with a foundation of knowledge to build on during the main conference sessions. This year, we are mirroring this effort by creating a Virtual Newly Diagnosed Program leading into our Virtual Annual Conference.

If your child has been diagnosed with Duchenne sometime after January 2018 and you have never attended a PPMD Annual Conference, you are eligible to participate in the Virtual Newly Diagnosed Program. The Program will consist of a Virtual Meet & Greet the week of June 22 (you will be assigned to one of the scheduled dates) as well as an interactive “Intro to Duchenne” webinar split over two evenings of July 9 and 10. By registering for the Virtual Newly Diagnosed Program, you will also gain access to the entire Virtual Annual Conference.


New Diagnosis & Early Care Guide

PPMD developed a comprehensive guide to provide accurate information that is easier-to-digest, and will help families to navigate caring for a child with Duchenne while maintaining a happy, rewarding life. By registering for PPMD’s Virtual Newly Diagnosed Program, families will receive a printed guide with their conference materials.

This guide is broken down into four main themes, and we recommend families reading at their own pace and comfort level.

  • What is Duchenne Muscular Dystrophy?
  • Adjusting to the Diagnosis & Finding Support
  • Care Considerations
  • Research & Clinical Trials
Download the Guide

Stay Connected

We encourage you to register with PPMD as a newly diagnosed family. This will establish a connection with us to ask any questions you may have, as well as stay up-to-date with PPMD and opportunities to get involved or attend in-person events near you.

Want to meet other families in your area? PPMD’s Connect program includes 26 groups over 25 states. To be connected to a coordinator directly via email please contact connect@parentprojectmd.org.

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