World Duchenne Awareness Day Special

Join Action Duchenne to Raise Your Voice for? World Duchenne Awareness Day 2024: What Can YOU Do??

World Duchenne Awareness Day unites the global Duchenne community annually for advocacy, action and change. This year is a monumental milestone as it marks the first year that the United Nations have officially designated 7th September as World Duchenne Awareness Day.

Duchenne Awareness Day is held on the 7th September each year to honour the 79 exons on the dystrophin gene. An error on any one of these exons causes Duchenne. The theme this year is?‘Raise Your Voice for Duchenne’.

This year’s theme emphasises the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with Duchenne muscular dystrophy. While we know that?life expectancy has increased over the last few years, there is still a long way to go in the fight for a better future for everyone living this devastating condition.?We want YOU to join us as we raise our voice alongside the global Duchenne community.?

What can YOU do?

• Take on Challenge 79 as an individual or as a team
• Get your child's school involved in Challenge 79
• Become an Action Duchenne Member to enable us to continue our life-changing work
• Make a donation towards our much-needed projects
• Share your story with the Duchenne community - email [email protected]
• Share our social media posts leading up to 7th September to help us raise awareness

Find out more on our website.

"The Action Duchenne Conference was a Game Changer for me as a new Duchenne Dad"?

"The Action Duchenne Conference is not simply a two-day event; it serves as a vital platform for families.?We found we left equipped with practical knowledge,?a network of support,?and a sense of community.?This comprehensive approach empowers families to confidently navigate the complexities of DMD and advocate for their child's wellbeing." Greg Hill, Action Duchenne Trustee

Find out what you could gain from joining us at the Conference this year in Greg's blog on our website.?

Action Duchenne Annual International Conference 2024

Friday 8th & Saturday 9th November 2024

Leonardo Hotel Hinckley Island, LE10 3JA

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Duchenne 101 Online: Bringing Knowledge and Support to You Saturday the 28th of September from 2pm – 5pm

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What is Duchenne 101 Online?

This year we have 6 sessions covering the medical, psychological and social aspects of living with Duchenne and what we can do to get the best outcome for everyone living with Duchenne.?

Sessions are:?

• Dystrophin in the Body
• Treatments (Current and future)?
• A Q + A sessions with Ravi, a 36 year old living and achieving with Duchenne?
• Coming to terms with Duchenne?
• Protecting the wellbeing of you and your child?
• Accessing the world around you?

These subjects are always relevant when it comes to Duchenne, not only when you are newly diagnosed. It is often when we feel most at home with Duchenne that it decides to throw another problem our way. We want to arm you with the knowledge and the information to make sure you and your family get the support or help you deserve.? It is a virtual event and we have done this to make it easier for those in remote and International communities to join as well as those of us that struggle to commute or access in person events. It's also a brilliant introduction ahead of our in-person conference in November, so you'll have familiar faces as soon as you arrive! The day will be run and hosted by Alex from the Action Duchenne team and if you have any questions at all about the day or want any further information please contact him at?[email protected]?or call/ text him on 07939973981. We look forward to seeing as many of you there as possible.

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