A blog by National Director, Florence Boulton
….and we’re back down to earth after the crazy (but exciting) weeks in the run up to our 2020 International Annual Conference (‘the Conference’), and of course the weekend itself!
I was so delighted to welcome over 700 registrants from over 50 countries across the world over the weekend of 14 and 15 November. We came together online to get the latest information, support and advice about Duchenne muscular dystrophy. We know that as well as learning from the content available, families and people living with Duchenne gained immense strength from meeting one another online and sharing their experiences.
We used to attend the Action Duchenne conference a lot. Then it became difficult due to affordability of travelling and hotel … We have also had other major changes in our circumstances that prevents us from coming. So to have the conference online was an absolute privilege as we felt we could join in and be part of this learning journey to help our son. –
Duchenne Mum (England)
Watch now
We saw nearly 4,000 unique video views over the Conference weekend. The live and pre-recorded content will remain online for the next six months and we will continue to promote it to even more Duchenne families over the coming months.
We are in the process of uploading all the LIVE sessions, for now, you can catch the incredibly popular ‘travelling with a disability’ session (register here to access the platform).
Very interesting and emotional as a mum listening to (George) talking about his relationship with his mother and his need to be independent and not feel alone.
Duchenne Mum (England)
Your questions answered
Over the course of the Conference weekend, we received many questions from the audience. We are working on getting all the questions answered and will be posting a question and answer section on our website over the coming weeks. As always, find out more using #ADCONF20!
Thank you for everything. Your great service to the Duchenne community is very much appreciated. It can be a lonely experience as a parent of a boy with Duchenne but linking in with Action Duchenne always empowers me.
Duchenne Parent (Ireland)
Vital Volunteers
Thanks to all who worked on this conference. I particularly appreciate the effort of our 20 amazing volunteers for their time, good humour, effort and autonomy to assist my team to make the event such a success.
Great conference! It was a really interesting weekend and I like the virtual format although I do miss meeting the families!
Volunteer, 4th Conference
Bringing our whole community together
What an incredible community we are. I am so proud to be a part of such a powerful, yet humble group of people. Over the weekend we saw so much openness, positivity and empathy among you all.
The conference has really made me feel so much connected to the Duchenne community even more than I felt already. I know a lot more about the scientific aspects now of Duchenne and have a lot more information on how best to help the school support my son continuing with what they have already put in place for him.
Duchenne Mum (England) first conference
We do hope that if you attended for the first time, or are new to the Duchenne community that you felt more supported and able to access the information you need to help you navigate your journey. I want to personally thank you for making the step to attend the Conference. I recognise how hard it can be and how emotionally complex attending a Duchenne event is for many of you.
My daughter and I live on Vancouver Island, British Columbia, Canada. My 5yr grandson, was diagnosed Sept 2 … we started watching the videos on Friday and got up at 1am Saturday and Sunday morning to attend. We attended your Newly Diagnosed Families weekend and this one. We are so grateful to Action Duchenne for making this available on line and helping us start to learn what we need to know to support (him).
Duchenne Grandparent (Canada)
My highlights
A highlight for me was Francesco Muntoni’s session, as his warmth and understanding emanated from the computer screen. I also joined many of you by being moved by David Schonfeld’s session on talking to your child. It struck a chord with me, the reassurance and empathy David offered brought me to tears. I think it was the way he made me, and many of you feel like we are doing the right thing, that we are not alone, and simply offering some techniques to cope was something we are not accustomed to hearing.
We can’t wait to meet everyone again next year. Please block out sometime in your diary for our 2021/22 Action Duchenne International Conference, and I look forward to seeing you on the 13th and 14th of November 2021.
The Action Duchenne conference is like Duchenne Christmas – it feels like everyone is part of a big extended DMD family, you catch up with old friends, there’s lovely food, a big meal, and a party. It’s also much more than Christmas to be honest because everyone there knows what we are all going through. Tapping into that deep understanding and solidarity keeps me going for the rest of the year. It really does.
Duchenne Mum (England)
Action Duchenne research projects updates
As I explained at the Conference; research is at the heart of our mission and we will leave no stone unturned in the quest for effective treatments and one day a cure. I am delighted to announce that we are steering ‘The Big Ideas Fund – keeping the Duchenne research pipeline flowing’, an exciting new research funding scheme to bring to the next generation of ideas into the lab.
With this project, the future truly is in your hands. Over the next few months we will be working with partner organisations and research funding bodies (along with you, our incredible Duchenne community) to back this potentially life-changing research initiative during the course of 2021/22.
Impact reports, achievement for all
There is no doubt the impact the Conference has made on all of our Duchenne families. We are compiling the results from the survey and will report the findings back to you all in due course.
We are also working to bring you the Action Duchenne Impact Report, a document which will help to explain the clear impact of our work including, but not limited to; The National Lottery Community Fund lock-down support project, the Science on Tour education programme, webinars etc.
Webinars
I am so pleased to let you know that we are developing the next set of webinars or online events which will draw on the most popular sessions from the Conference. We’ve got some treats in the pipeline, from travel to learning and behaviour, clinical trials to art therapy, so please do look out for announcements and book your places.
As always, the best way to keep up to date is to join our mailing list here.
I wish you all the best over the next few weeks as we move out of the stricter lock-down rules. We will be regularly updating our COVID-19 advice for Duchenne families page, please do take a look and share with your networks.
Keep safe and well,
Florence
