April 10, 2020 / Advocacy,Care,Community,Research

Thank you for always being our strength

Thank you for always being our strength

Re·sil·ience: (noun) the capacity to recover quickly from difficulties; strength.

Our Duchenne community is the definition of resilience. And we have never had that resilience challenged like we have during the COVID-19 pandemic. We are so inspired by every family in our community, facing each new day head on.

This is a special time of year for many families. Under normal circumstances, families may be gathering to celebrate Easter, Passover, Spring Break. But if anyone understands the critical importance of social distancing, it’s our community. As we head into this weekend, we want to say thank you for being such an amazing source of inspiration, and for your help in keeping us and each other going.

We are resolute in leading the fight to end Duchenne because of you, and we promise to continue to do all we can for our community, now and when we find ourselves back to normal. Every day we are providing valuable resources and updates, including webinars and Facebook Live events to answer your questions about COVID-19 as it relates to Duchenne, highlighting families and care providers that offer practical and sound advice.

But our work goes beyond this virus – we have a mission to fulfill and a momentum in our community that we must maintain. We are working diligently to honor our commitments this year, which include:

  • Investing in the most promising research and maintaining our initial annual commitment of over $3,500,000 to Duchenne research.
  • Improving the quality of and access to unbiased care for our loved ones with Duchenne. We hope to maintain our full investment in our Certified Duchenne Care Center Program this year; announcing the first Dual Certified Duchenne Care Center – servicing both children and adults – just last week.
  • Enhancing The Duchenne Registry in order to help patients learn about research and trial updates quickly, while easily accessing our genetic counselors through the roll-out of office hours.
  • Ensuring that lawmakers and regulatory agencies federally and locally understand the concerns of our community and the importance of maintaining federal funding.

For over 25 years, our number one priority has been and continues to be YOU. We want to ensure that you and your family remain healthy and are armed with the most relevant information to battle Duchenne, during this pandemic and beyond. Whether we are working remotely or welcoming you with a smile and much needed hug at our Annual Conference later this summer, your PPMD family has been, is, and will always be here for you.

This is indeed a crazy time for all of us, full of uncertainty and anxiety. And as hard as it may be, remember to find moments in your day to cherish this time with your family.


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