Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

Duchenne Awareness Month 2020

Join the mission to defeat Duchenne this September!

Did you know that every year 1 in 5,000 newborn boys around the world are diagnosed with Duchenne muscular dystrophy? That’s more than 250,000 children and young adults living with Duchenne, the most common fatal genetic disease diagnosed in childhood. Jesse’s Journey is Canada’s leading registered charity in the mission to defeat Duchenne. We want YOU to join us this September, Duchenne Awareness Month. Gather your friends, family, colleagues, and community to take action and help us raise awareness and funds for Duchenne muscular dystrophy.

NEW in 2020: The Government of Canada has recognized Monday, September 7, as World Duchenne Awareness Day and has declared the month of September as Duchenne Awareness Month across the country.

Spread The Word

World Duchenne Awareness Day

Jesse’s Journey is proud to partner with patient organizations from around the world to celebrate World Duchenne Awareness Day – a global day aimed to raise awareness for those affected by Duchenne and Becker muscular dystrophy.  The date, September 7 (7/9) represents the 79 exons of the Duchenne gene. This year marks the seventh year of the international event and the theme is: ‘Duchenne and the Brain’.

Too often, learning and behavioural issues are not diagnosed properly or are attributed to the physical limitations or the use of steroids. However, most problems are caused by the lack of dystrophin in the brain. This should become common knowledge amongst clinicians, psychologists, school teachers, families and friends in order to be able to help the person with Duchenne. The World Duchenne Organization has put together resources to help you raise awareness on this topic within your community.

Who can you reach out to?

  • Care centers and other clinicians involved in DMD/BMD;
  • National or local organizations for (neuro)psychologists;
  • Schools and teachers who are seeing DMD/BMD children for longer times.

What can you send them?

  1. Forward them the full European NeuroMuscular Centre report: ENMC report
  2. Watch and use the YouTube materials for education
  3. Share the Duchenne Care Videos on Behavior & Adjustment and Learning & Intelligence

Duchenne and the Brain #WDAD2020

  1. Connect with World Duchenne Awareness Day on FacebookTwitter or Instagram
  2. Include the hashtag: #WDAD2020
  3. Share what your message with the Canadian Duchenne community by tagging Jesse’s Journey on:

Join the Fight

Throughout September, Jesse’s Journey will be hosting three fundraising events where we encourage you to register, participate, or donate in support of Duchenne research. Whether you enjoy walking, running, yoga, meditation, video or tabletop games – there’s something for everyone!

The Walk to Defeat Duchenne unites families from coast to coast to raise awareness and funds for Duchenne muscular dystrophy. In 1995 John Davidson pushed his son, Jesse, across Ontario. This foundational feat launched Canada’s largest movement to fund research and support families living with Duchenne. This year, we invite you to join us as the Walk celebrates the 25th anniversary of Jesse’s Journey.

Due to COVID-19, the Walk to Defeat Duchenne has gone virtual and will now take place on World Duchenne Awareness Day, Monday, September 7, 2020. 

We encourage participants to walk on this day in their local community, or if choosing to complete the Founders Challenge (33KM), walk on a variety of days leading up to and/or on September 7, 2020. The day will also include virtual fun such as warm-up, welcoming ceremonies, awards, and much more, so be sure to tune in before and after your walk!

Live in the MOVEment

Maggie Aynsley and Kasha Mitton, creators of The MASH Movement, will be hosting Live in the MOVEment – 25 days of movement, mindfulness, and motivation throughout September in celebration of Jesse’s Journey 25th anniversary.

This experience offers a unique opportunity for you to move your body and stretch your mind, all from the comfort of your home! Register for Live in the MOVEment and personalize your experience of health and wellness.

For $25, you will receive 25 days of live events and pre-recorded online fitness classes from a line up of wellness leaders from across the globe.

Squad Up

For many in the Duchenne community, video games are not only a source of entertainment but a way to transcend physical limitations and build a wide network of friends from around the world. Squad Up is a charity gaming event that allows you to fundraise by playing your favourite games, whether online or IRL (“in real life”). It’s simple – play any game, anyway, any day, and help raise funds for Duchenne muscular dystrophy.

It doesn’t matter what kind of gamer you are – tabletop, board game, sport, or video, Squad Up is for everyone. Play with family around the table, live stream your games online or dust off your old game console, the most important part is to have fun, and help us #DefeatDuchenne.

Light Up Your City

Since 2014, people – like you – have helped raise awareness of Duchenne by organizing local monuments to light up in red. This year, Jesse’s Journey has planned for the following buildings to light up from coast to coast on Word Duchenne Awareness Day and beyond:

  1. BC Place – Vancouver, British Columbia: Monday, September 7
  2. Canada Place | Sails of Light – Vancouver, British Columbia: Monday, September 7
  3. Calgary Tower – Calgary, Alberta: Saturday, September 5
  4. CN Tower – Toronto, Ontario: Monday, September 7
  5. 3D Toronto Sign – Toronto, Ontario: Monday, September 7
  6. Niagara Falls – Niagara Falls, Ontario: Monday, September 7
  7. Hespeler Falls – Cambridge, Ontario: Monday, September 7
  8. Cambridge Civic Square Sign – Cambridge, Ontario: Monday, September 7
  9. The Grand River Pedestrian Bridge – Cambridge, Ontario: Monday, September 7

Help light up a monument or landmark in red in your city! It’s not too late to contact your local municipal office or monument website to book. Once completed, let us know the location and date, and we’ll add it to the list. Be sure to take a picture and share it with us by posting it on your social media using #WDAD2020 and tagging Jesse’s Journey on Facebook @defeat_duchenne, Twitter: @jesses_journey, and Instagram: @jesses_journey.

Host Your Own Event

Why not host your own fundraising event in September? We’re here to help every step of the way. You can do anything to raise funds to defeat Duchenne – from donations in lieu of birthday gifts, lemonade stand, or car wash – focus your efforts around what’s meaningful for you and your community.

Click the button below to register your event and our Coordinator of Administration and Community Engagement, Matt Gennaro, will be in touch to help you bring your idea to life!

Whatever you choose to do, thank you for joining the mission to defeat Duchenne muscular dystrophy during Duchenne Awareness Month in September. Please don’t hesitate to contact us should you have any questions or concerns:

Matt Gennaro

Coordinator of Administration and Community Engagement

[email protected]