PPMD COVID-19 (Coronavirus) Information Center

We recognize that as the COVID-19 (coronavirus) pandemic continues to evolve and new cases are diagnosed in the US, concerns surrounding infection and prevention measures continue to grow as well. We have created this COVID-19 resource section to help you and your family navigate this global crisis, including answers to your most pressing questions to fun family activities to help you get through long days (and nights) at home.

General Resources

For the most up-to-date information on COVID-19, please refer to the CDC’s website.

FAQs: COVID-19 Recommendations for the Duchenne Community

PPMD is in contact with the Centers for Disease Control (CDC) and monitoring for any specific recommendations pertinent to the Duchenne population. PPMD also continues to consult with physicians from many of our Certified Duchenne Care Centers to determine recommendations specific to the Duchenne population. Please bookmark this page and check back regularly as new information and resources become available.

Recommendations for the Duchenne Community >

Fact Sheet & Report: COVID-19 & Duchenne

Report

PPMD is excited to share the publication of a consensus statement for the care of persons with Duchenne and Becker muscular dystrophy during the COVID-19 pandemic. This article is the result of a group of expert clinicians in our community, many representing Certified Duchenne Care Centers. The publication outlines consensus recommendations if a person with Duchenne or Becker were to be diagnosed with or suspected of infection with COVID-19, and guides physicians and caregivers on best practices for management and treatment.

View the Report >

COVID-19 & Duchenne Care Imperatives Fact Sheet

PPMD has created an easy-to-use fact sheet that provides high-level takeaways for the care of individuals with Duchenne and Becker during the COVID-19 pandemic, based on information from the recently published article accepted to Muscle & Nerve. This article was the result of a group of expert clinicians in our community, many representing Certified Duchenne Care Centers.

Please download and print this guide and share it with your family and medical team!

Download Fact Sheet >

Survey: Impact of the COVID-19 Pandemic on Duchenne

PPMD has launched a survey to gain insight directly from the Duchenne and Becker community on the impact of the COVID-19 pandemic related to care, clinical trials, and access to FDA approved therapies.

This information is vital to informing the work of relevant stakeholder groups in the Duchenne and Becker community including physicians, drug developers, and patient advocacy groups. PPMD plans to share the results with the community later this spring.

The survey should take around 15-20 minutes to complete. Your personal information will not be shared with anyone.

Complete the Survey >

Webinars

PPMD is providing regular webinars to address some of the most critical topics in our community during this crisis, as well as some fun life hacks to get you and your family through this unprecedented time. Watch webinars you might have missed and join us for our upcoming programs.

Webinars >

Updates on Duchenne Clinical Trials/ Approved Drugs and COVID-19

As more families begin to self-quarantine, work & school from home, and drastically change day-to-day routines, questions are arising about what it means if you or your child are receiving medication or treatments from a specific company or participating in a clinical trial. PPMD has reached out to our industry partners and asked for updates. We will continue to update this list as more information becomes available.

More Information >

Family Activities

There is nothing better than quality family time, but as much as we all love each other, as we look at potentially weeks of self-quarantining, the ideas may start to dry up. Luckily, none of us are alone and there are a number of fun, free online resources for the entire family – from virtual tours of zoos and museums, to concerts and opera, to books and educational tools that will make family time that much more enjoyable.

And once you go through these ideas, create your own and share them with PPMD!

Family Activity Ideas >