Duchenne Action Month – Week Three: Resiliency

September 14-20

No other community knows the importance of resiliency like the Duchenne community. That is because we face challenges together, speaking for those with no voice, running for those who can’t run, and fighting to ensure that all people living with Duchenne have access to safe, accessible therapies.

Resilience Is Strength: Thank You for Fueling Our Fight to End Duchenne

As we celebrate the resiliency of our community this week as part of Duchenne Action Month, we reflect upon all that we continue to accomplish as we work alongside you, fueled by your inspiration. PPMD continues onward no matter the obstacles in our way, and despite the circumstances that have brought us to this place in time, we have found opportunities to connect with, educate, and lift one another up. You are the definition of resilience.


Resiliency: Sustained

Never before have we seen the importance of staying resilient in trying times and staying committed to our goals. One easy way you can help us remain successful in our mission is by joining our monthly giving program. Your recurring monthly donation means, together, we will continue to attack Duchenne from every angle. Even small monthly gifts add up to make a big difference.


One-on-One Support

NEW in 2020! We are making it easier than ever before to connect with PPMD’s genetic counselors regarding your Registry and genetic testing questions. Both genetic counselors managing The Duchenne Registry and Decode Duchenne are board-certified and have extensive experience working with Duchenne and Becker families. Just visit The Duchenne Registry, click on the Calendly link, and select a time slot that is convenient for you – it’s that simple!


Flu Season: Stay Safe, Informed, and Healthy

As flu season approaches, we want to help you and your family stay safe, healthy, and informed. The SARS-CoV-2 (coronavirus) pandemic complicates flu season, making it particularly important to protect ourselves and our families against viral illness. Similar symptoms of the flu and COVID-19 mean that testing may be the only way to distinguish them, and prevention is key. As a result, it is important to vaccinate yourself and all immediate family members against the flu. It is also critical to follow responsible health practices and wear a mask, wash hands frequently, and follow social distancing recommendations.


Download Checklists To Help Organize and Navigate the Many Moving Parts of Duchenne Care

PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression.


Upcoming Webinar: Resiliency in Results – What We Learn When Trials Are Terminated

On Wednesday, September 16 from 1:00 – 2:30 PM EDT we are pleased to be joined by partners at Pfizer Inc., Roche/Genentech, and Wave Life Sciences as they discuss what they have learned from terminated trials, the value of participation, and the influence the Duchenne community has had on their paths forward.


Explore Physical Therapy Resources & Videos

PPMD recently unveiled a new series of Physical Therapy Videos and Range of Motion Guide in partnership with our Change It Champion Award-winner Claudia Senesac, PT, PhD, PCS, from University of Florida. We all know how critical consistent PT is for people living with Duchenne and this new video series demonstrates the current Physical Therapy Guidelines, PPMD helped develop. Included in the series are recommendations for stretching routines and safe, favorable mobility device positions for both ambulatory and non-ambulatory people living with Duchenne.


View Insurance Access & Coverage Resources

Whether you are seeking coverage for an FDA-approved therapy, need approval from your insurance company for medical devices or equipment, or need assistance with medication and appointment coverage, PPMD has assembled resources to help families and medical providers at each stage of the healthcare access process. PPMD also works directly with organizations that can assist with walking you through the process.


Watch: Building Resilience – Overcoming Compassion Fatigue and Burnout

A Duchenne diagnosis affects the entire support network, including family and healthcare providers. In this session from PPMD’s 2020 Virtual Annual Conference, parents and experts discuss the importance of self-care so that you can ultimately be the best care provider for your family.