PPMD COVID-19 Information Center: Additional Resources

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

General Resources

Learnings from PPMD’s COVID-19 Pandemic Survey

In spring 2020, PPMD released a survey to better understand the patient experience with care, trials, and access to approved therapies during the COVID-19 pandemic. We have been creating resources and developing strategies based on the learnings from the data. 

In the coming weeks, PPMD plans to release a follow-on survey where we will dive into specific issues based on our learnings from this first survey. We appreciate the community’s willingness to provide this information in order to help us develop better support materials and resources for everyone impacted by Duchenne and Becker.

View the Report >

PPMD’s Back-To-School Webinar Series & Resources: In-Person and Virtual School Scenarios

As we look towards this next school year, PPMD recognizes that our community is facing new and difficult choices about in-person and virtual learning. To help inform and empower families, we recently hosted a back-to-school webinar series tackling questions and concerns the community has about both in-person and virtual school scenarios. PPMD’s Care Team was joined by leading experts from our network of Certified Duchenne Care Centers, as well as families who, like you, are navigating this unprecedented time.

Resources & Webinar Takeaways >

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 >

Recommended Language for Families Communicating Potential Risk of COVID-19

Many families have asked PPMD if we have recommended language they could use to better explain Duchenne and the potential risk COVID-19 could have on their child and family. According to WHO, maintaining social distancing and self-isolation practices are vital in the prevention of COVID-19. Recommendations about shelter-in-place or stay-at-home orders may be different depending on where you live, but good infection prevention practices are key, including staying home from work and school to minimize exposure. We recognize that this may not always be possible, and recommendations may be dependent on where you live and the specific risks to the person living with Duchenne for whom you care.  We have provided for your information, the below language you may wish to use in the discussion of these issues with others.

Learn more >

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 >