Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

Duchenne Awareness Month 2021

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 form of muscular dystrophy.

Jesse’s Journey is Canada’s leading charity in the fight to defeat Duchenne, and this year, we challenged YOU to participate in our 30-day awareness challenge throughout September – Duchenne Awareness Month (#DMDAwarenessMonth).

Thank you for rising to the challenge and helping reach monumental levels of awareness for Duchenne muscular dystrophy across Canada. Check out the video below to see the impact YOU made possible:

Throughout the past 30-days, you have created a ripple of awareness for this #raredisease across Canada:

• 364,000 people have seen at least one awareness post.
• 184 people mentioned #DMDAwareness Month and @jesses_journey.
• 2,126 people have interacted with our awareness messages.

Let’s keep up the momentum and continue to use the power of social media to connect, educate, and take action to #DefeatDuchenne.

Canada Recognizes Duchenne Awareness Month & World Duchenne Awareness Day

The Government of Canada has recognized September 7, as World Duchenne Awareness Day (WDAD) and has declared the month of September as Duchenne Awareness Month across the country.

About the 30-Day Challenge

“Alone we can do so little; together we can do so much.” – Helen Keller

We challenged YOU – the Canadian Duchenne community – to use the power of social media for good. Whether you used Twitter, Instagram, Facebook or LinkedIn, we challenged you to share, comment, like or post every day for 30 days throughout Duchenne Awareness Month.

We themed every day of the week and shared a new post for you to engage with every day and asked you to follow these three simple steps:

  1. Follow Jesse’s Journey: Twitter, Facebook, Instagram, LinkedIn
  2. Share, comment, and like our posts or create your own based on the theme of the day (don’t forget to tag Jesse’s Journey and use #DMDAwarenessMonth)
  3. Check back on October 1 as we announce how much awareness we raised throughout the month!

World Duchenne Awareness Day – September 7

Jesse’s Journey was 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 marked the eighth year of the international event, and the theme was: ‘Adult Life and Duchenne.’

Over the past decades, the life expectancy of individuals affected by Duchenne muscular dystrophy has increased significantly. Adults with Duchenne are not an exception anymore. Adult life with Duchenne comes with new challenges and opportunities, as well as new medical issues. This World Duchenne Awareness Day, we are globally advocating for young adults and adults with Duchenne to live their life to the fullest.

Read more about the success of World Duchenne Awareness Day 2021 by clicking the button below.

What To Do

  1. Update your profile picture with the official WDAD balloon
  2. Add the social media banners (FacebookTwitterLinkedIn) and Instagram post
  3. Share the Press Release with your families, care centers, and local press
  4. Share the Did-You-Knows with 17 facts about Duchenne and Becker MD
  5. Share the Duchenne Manifesto
  6. Tag all your activities with #WDAD2021 to share it with the global community!

Translations

  1. WDAD 2021 Theme Announcement: Adult Life & Duchenne (also available in DutchSpanishPolishRussian, and Ukrainian)
  2. Duchenne Manifesto (also available in ArabicFrenchGerman, and Spanish)

Logo

  1. English – WDAD Logo in Full Color (link) – WDAD Logo in Negative (link)
  2. Available in ArabicPortugueseRussianSpanish, and Turkish

Video

  1. English: https://youtu.be/TF058rY-Hs8
  2. French: https://youtu.be/pgdHkhD6dhk

Light Up Your City

Since 2014, the Canadian Duchenne community has helped raise awareness of World Duchenne Day by organizing local monuments and landmarks to light up in red. This year, Jesse’s Journey has planned for the following buildings to light up from coast to coast on September 7:

  1. BC Place – Vancouver, BC
  2. Canada Place | Sails of Light – Vancouver, BC
  3. Fraser River Walking Bridge – Vancouver, BC
  4. Science World – Vancouver, BC
  5. High-Level Bridge – Edmonton, AB
  6. Calgary Tower – Calgary, AB
  7. Winnipeg Sign – Winnipeg, MB
  8. CN Tower – Toronto, ON
  9. 3D Toronto Sign – Toronto, ON
  10. Niagara Falls – Niagara Falls, ON (Sept 6)
  11. Mississauga Clock Tower – Mississauga, ON
  12. The Grand River Pedestrian Bridge – Cambridge, ON
  13. Cambridge Civic Square Sign – Cambridge, ON
  14. Hespeler Falls – Cambridge, ON
  15. Brant Street Pier – Burlington, ON
  16. Hamilton Signature Sign – Hamilton, ON
  17. Oakville Town Hall – Oakville, ON
  18. Riverwalk Commons & Fred A. Lundy Bridge – Newmarket, ON
  19. New Brunswick Legislative Building – Fredericton, NB
  20. Charlotte Town City Hall – Charlottetown, PE
  21. Halifax City Hall – Halifax, NS

Help light up a monument or landmark in red in your city! Use our template below 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 #WDAD2021 and tagging Jesse’s Journey on Facebook @defeat_duchenne, Twitter: @jesses_journey, and Instagram: @jesses_journey.

On September 7, the World Duchenne Organization will launch an online event about Duchenne and adult life. The free event will be accessible for everybody via Zoom. We’re inviting you to join this educational online event!

In short:

  • The event takes place on Tuesday, September 7, 8-10 a.m. EST (2 – 4 p.m. CEST)
  • International experts share their experience and knowledge
  • Everyone can register for free
  • Live interpretation in multiple languages is available

Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.