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Celebrate World Duchenne Day and
Duchenne Awareness Week by Taking Action!
World Duchenne Day is a day dedicated to raising awareness of Duchenne muscular dystrophy. It’s been observed each year since September 7, 2014. The date was chosen because there are 79 exons in the DMD gene. Most countries throughout the world write the date as Day-Month-Year, so September 7th is most commonly written as 7-9.
World Duchenne Day provides a fantastic opportunity for anyone and everyone to create awareness of Duchenne muscular dystrophy and raise funds to help find a cure for this generation. It’s especially important for those of us in the Duchenne community to make the most of this day. There are many different ways you can participate from anywhere in the world. I included some events and activities below for you to consider. I’ll add to this list as more details become available, so please be sure to check back often.
I think sometimes we expect people to understand everything there is to know about Duchenne all at once. Although that would be amazing, it’s not realistic. I believe a better approach is to take it one step at a time. To be most impactful, we should begin by educating others to address whatever it is that’s most important to us.
My challenge to you for World Duchenne Day is to record a video with your answer to the question: What is the one thing you want people to know about Duchenne muscular dystrophy? Upload your video to youtube, facebook, or a similar site of your choice. Then, share it in rareCourage and on the DuchenneXchange Facebook page. Here are a couple of examples.
DuchenneXchange Community Engagement Council member Bryson Foster
My son, Devin Argall
World Duchenne Day t-shirts are available for purchase on the CureDuchenne website. They ask that you wear the shirt on World Duchenne Day and post photos to the DuchenneXchange and social media sites of you, your family, friends, and co-workers wearing the shirts.
They also suggest creating a Facebook fundraiser to help fund research for a cure. It’s very quick and easy to set up.
Select one of the banners we created specifically for World Duchenne Day.
Set up your own fundraising page.
Be sure to write a personal message about why finding a cure for Duchenne is important to you.
Share the fundraiser on your own home page to ask your network to support your fundraising efforts.
Braedan’s Bridge is asking everyone to wear their Braedan’s Bridge t-shirts and to share pictures on the DuchenneXchange and social media sites. If you don’t already own one, you can purchase a Braedan’s Bridge t-shirt on their website. They’re even available in camouflage, but I suppose that should come as no surprise to anyone that knows Braedan. All proceeds will go toward Duchenne research.
Fritz & Friends
Fritz & Friends is running a campaign in which they are asking people to make a donation in exchange for a temporary tattoo of the three exons that Fritz is missing from the DMD gene. It’s the same tattoo that both of Fritz’ parents have on their arms. You can order your temporary tattoo online, but you’ll need to hurry. They are accepting donations and mailing out tattoos up until Aug 31.
Little Hercules Foundation
Little Hercules Foundation will be sharing daily social media posts that cover a variety of topics including, financial resources, private insurance, Medicaid, and other general information that’s sure to be helpful for the Duchenne community. There will be a different theme each week in September that will address topics to make living with Duchenne muscular dystrophy a little easier.
This year Jesse’s Journey is going to “up their game” by launching SQUADUP gaming marathon. The goal is to unite video game and board game enthusiasts who want to support their mission to Defeat Duchenne by raising money and awareness while playing games. Participants choose the game they’ll play, whether it’s Fortnite, Mario Kart, Monopoly, Checkers, or any other game. If you’re interested in “upping your game,” you can sign up online.
But that’s not all Jesse’s Journey has planned for World Duchenne Day. They’ve also arranged for a number of well-known buildings and attractions to be lit up red to generate awareness of Duchenne including: