by: Parent Project Muscular Dystrophy
SEPTEMBER IS DUCHENNE ACTION MONTH!
This year’s Duchenne Action Month feels different, like everything, in light of the global pandemic. Under normal circumstances, everyone would be back at school or heading back to school – but now that fall ritual looks different for families across the country, based on where you live and what your own concerns are relating to the idea of re-entry.
This year PPMD wanted to remind you that being stronger together in times of uncertainty is what makes our community unlike any other. We are here to share the resources we have to help you navigate this complex diagnosis during an unprecedented time, including ways to connect with the community, raise awareness, and help fund the fight to end Duchenne.
WEEK ONE: EMPOWERMENT
September 1-6
A Duchenne diagnosis is overwhelming, even if you and your family have lived with it for a number of years. As the disease progresses, new challenges arise. Knowledge is power in the fight to end Duchenne though, and PPMD has a number of resources to help you and your family navigate school (both virtual and returning in-person), a new diagnosis, and the current pandemic.
CREATE A FACEBOOK FUNDRAISER
Join the fight by creating your own Facebook fundraiser this Duchenne Action Month! Set a goal and share with your friends throughout September to raise awareness and funds for PPMD.
RAISE AWARENESS BY USING PPMD’S WORLD DUCHENNE AWARENESS DAY FACEBOOK FRAME
On Monday, September 7, the global Duchenne community will come together for World Duchenne Awareness Day. Raise awareness by adding PPMD’s World Duchenne Awareness Day frame to your profile picture!
DOWNLOAD BACK-TO-SCHOOL RESOURCES
As we look towards this next school year, PPMD is working to support your family and help you plan for a successful classroom experience, whether it be in-person or virtual.
- Download PPMD’s NEW Education Matters Guides: A series of comprehensive guides for parents and teachers with the goal of optimizing the learning environment for children, teens, and adults living with Duchenne.
- Watch PPMD’s Back-To-School Webinar Series: Tackling questions and concerns the community has about both in-person and virtual school scenarios.
VISIT PPMD’S COVID-19 INFORMATION CENTER
As the COVID-19 (coronavirus) pandemic continues to evolve and the country slowly begins the process of reopening, PPMD continues to update our COVID-19 Information Center. This resource section was designed to help you and your family navigate this global crisis, including answers to your most pressing questions.
ACCESS CARE & SUPPORT MATERIALS
At PPMD we strive to equip every family with the most up-to-date care information possible. For this reason, we have dedicated an area of our website to allow for quick access to important resources, including:
- New Diagnosis & Early Care Guide
- Family Care Guide
- Education Matters (now available in 3 volumes specific to age)
- Emergency Care Resources
- Care Checklists
BUY YOUR PPMD BACK-TO-SCHOOL SWAG
PPMD’s new cooler bags are a great way to keep your lunch cool, whether you are back in the classroom or learning from the back porch! We also have backpacks and sweatshirts to get you ready for Fall! Check out our store for these items and more to help show your PPMD spirit this Duchenne Action Month.
UPDATE YOUR DUCHENNE REGISTRY APP ACCOUNT
Have you downloaded PPMD’s new Duchenne Registry app? The new app, with its user-friendly interface, firmly places The Duchenne Registry at the center of the Duchenne data world. If you are already active within the app, please remember to complete your surveys in the Activities section and make sure you submit a copy of your genetic test report. If you have never participated in The Duchenne Registry, or haven’t yet activated your app account, now is a great time to join! Your data is critical in the fight to end Duchenne.
