by: Parent Project Muscular Dystrophy
It’s World Duchenne Awareness Day!
Today, September 7, is World Duchenne Awareness Day (#WDAD2020)! On this day we raise awareness for Duchenne around the globe. Each year, World Duchenne Awareness Day highlights a special theme that deserves more attention. This year that theme is Duchenne and the brain. PPMD is working hard to learn more about how Duchenne affects the brain, and how we can better manage problems with learning, behavior, anxiety, and depression. We believe that with a better understanding of how Duchenne affects the brain, we can improve the quality of life for our loved ones.
Sharing our story is one of the most impactful ways we can raise awareness on World Duchenne Awareness Day. Share your family’s story today in honor of #WDAD2020 and help us raise awareness and spread information about our fight to #EndDuchenne!
Duchenne Action Month
Week Two: Awareness
September 7-13
By telling your Duchenne story, by sharing your experience on social media or email or in person, you are raising awareness and helping propel a global effort to shine a spotlight on this rare, genetic disease.
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.
Join Today’s Livestream Program on Duchenne and the Brain
Tune in live this morning, September 7 at 9am EDT for a two-hour livestream hosted by World Duchenne Organization where experts including Kathi Kinnett, PPMD’s Clinical Care Advisor, will share their experience and knowledge about how Duchenne affects the brain, and how we can better manage problems with learning and behavior. If you miss the live event, the recording will be available afterwards.
Watch: PPMD Advocacy in Action
Next year marks the 20th anniversary of the MD-CARE Act which fundamentally changed the Duchenne care and research landscape. Watch our video to learn how you can join the fight to end Duchenne by raising your voice in Washington D.C. at PPMD’s Advocacy Conference. We hope you will consider joining us in our efforts to continue the momentum that started two decades ago.
10 Tips & Tricks for Navigating School & Home Routines
In response to the COVID-19 pandemic, many families in our community are facing changes in school and home routines. There can often be heightened emotions around these disruptions, leaving adults and kids alike stressed and overwhelmed. In Duchenne, existing challenges with learning, behavior, anxiety, and depression can be exacerbated, making this “new normal” difficult to navigate. PPMD has compiled some tips you can use to help tackle the disruption of routines, and establish a family schedule to promote physical and emotional health.
Join PPMD’s Upcoming Virtual End Duchenne Tour Stops
After our “summer break” we’re excited to confirm our upcoming virtual End Duchenne Tour stops! Even though we can’t be together in person, we are eager to connect with families and care providers regionally to hear about the latest care and research updates. This Saturday, September 12 we’ll be in Portland, OR with the teams from OHSU (Portland) and Seattle Children’s and there’s still time to register if you are interested in joining us! We’ll then be heading to St. Louis on October 17 in partnership with University of Missouri (PPMD’s first adult Certified Duchenne Care Center) and Children’s Mercy, and we’ll wrap up the year on December 5 in Miami featuring bilingual participation for Spanish speaking families.
Share the 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!
Know Your Code: Free Genetic Testing & Information Through Decode Duchenne
Identifying a person’s precise mutation matters, for diagnosis, therapies and family planning. PPMD’s Decode Duchenne program offers free genetic testing to individuals with a confirmed or suspected diagnosis of Duchenne or Becker, who reside in the US or Canada. Free carrier testing is also available to females with a positive family history.
Back-to-School Shopping? Use AmazonSmile to Benefit PPMD – Now Available on the Amazon Shopping App!
Are you back to school shopping or setting up a homeschool classroom or new work space? Your Amazon purchases can help support PPMD through AmazonSmile. You can also now use AmazonSmile in the Amazon shopping app! Follow these instructions to turn on AmazonSmile and start generating donations for the fight to end Duchenne!
- Open the Amazon Shopping app on your device
- Go to the main menu and tap ‘Settings’
- Tap ‘AmazonSmile’ and follow the on-screen instructions
If you do not have the latest version of the Amazon Shopping app, update your app.
Double Your Impact!
Did you know that many employers offer matching gift programs that can double or even triple your donations? Some offer contributions for employee volunteer hours as well.
