Share your experiences to help others

As the Action Duchenne International Conference 2020 is virtual this year, we have the opportunity to do things a little differently! As well as an exciting group of speakers, we want to give as many families as possible the chance to share hints, tips and experiences with others in the Duchenne community, to help them on their journey.

To make this online area extra special, we need your help! Please have a think about your experiences and what you could share with others to help them. You can then make a short (or long if you are feeling the recording vibe!) video and send it to us. We will share the video with our community as part of the conference.

What should I talk about?

You can talk about any part of your journey that might help others. The kind of topics you could talk about are:

• What was diagnosis like for you?
• Is there advice you would share with parents going through the early diagnosis stage right now?
• How did you find the EHCP application process?
• What did you wish you knew when you first went through the EHCP process?
• What was your experience of working with school to improve inclusion for your child.
• Do you have any cost/time-saving nuggets you can share, for example getting fast-passes at theme parks, cinema cards etc.
• Have you gone through the adaptation process, have you moved to accessible accommodation? Can you give us a guided tour of your adaptations?
• Have you travelled, gone to festivals, flown with a power chair?
• Do you have a WAV? Can you show us around it and point out things that work well, and things that don’t?
• As a person living with Duchenne, how did you find transition to adulthood?
• How did your parents explain about your condition and how did what they said have an effect on you?
• How did you make decisions about you care, or your child’s care that were difficult for you, such as starting steroids, or undertaking surgery?

Send us your video

These are just a few ideas, and we’d love to hear your own experiences, tips and hints that will help others to navigate their journey with Duchenne.

Don’t be shy, every contribution is valid! You may say something which makes a lasting impact on someone going through the same experience!

Thank you

Thank you so much for taking the time to help others within the Duchenne community. Registration for the Action Duchenne International Conference 2020 is FREE and all are welcome.