International Conference and Community
Blog by Florence, National Director
Hello everyone! I am glad to be back sharing with you my updates and insights from the Action Duchenne 2022 International Conference.
Action Duchenne International Conference 2022
Wow! What a weekend it has been! The Action Duchenne International Conference 2022 took place on Friday 11th and 12th of November in Hinckley Island, were the culmination of many hours of planning, anticipation and hard work for our whole team to deliver our first in-person conference since 2019. It truly was the unmissable event we had hoped it would be.
The world class expertise coupled with the lived experience from people living with Duchenne resulted in discussions, sharing and exploring topics which were inspiring, uplifting and transformative
“Both my wife and I have immensely enjoyed the Action Duchenne conference 2022 and would like to thank you and the charity for allowing it to happen. We have recently received a diagnosis of DMD for our son and are very much in the early stages of learning about this condition. This conference has been an immense help in our understanding of the condition, as well learning about current and future treatment options. Having met and listened to so many enthusiastic clinicians and researchers about the work they are carrying out gives us much hope for the future.” Chris, Duchenne Dad
It was such a well organised event. My husband and I can’t thank Action Duchenne enough for organising this event. We would definitely be in a very different space mentally and emotionally had it not been for the excellent support you guys provide us. The opportunity to talk to the top minds in Duchenne world is something money can’t buy and for that we are immensely grateful.” Tanvi, Duchenne Parent and Action Duchenne Volunteer
Opening remarks: Rebuild, Refocus and Reinvent strategy and ‘All-through Support’ programme. The conference delivered such value and made an enduring impact.
HIghlights of Day 1: it was such a pleasure to meet in person once again, to see families connect with each other in the corridors between sessions, over coffee and during the meal breaks- a real sense of togetherness. The dinner on the Friday evening was a space for everyone to relax and enjoy the live music among friends.
Highlights of Day 2: watching the young people over the two days meeting their peers, making new friendships was wonderful to see and a real highlight of the conference.
Creche and Hangout
It wasn’t all about the adults at the conference! Once again we provided a creche which was run by experienced childcare staff and was free of charge to our families. This allowed parents to attend sessions with the assurance that their children were being well taken care of and more importantly, having fun! It also gave children living with Duchenne and their siblings the opportunity to be with others in a similar situation.
This year we took our ‘Hangout’ area for teenagers and young people to another level. The Young Film Academy joined the Hangout on Friday for a ‘Make a Film in a Day’ project. Young people got involved with every aspect of film-making, from brainstorming the initial ideas and being both in front of and behind the camera.
The completed film was shown at the Friday night dinner and was very well received, with hardly a dry eye in the house! We are so proud of those who took part, many of whom pushed themselves out of their comfort zone to take on this new experience. Nina from the Young Film Academy told us how much she enjoyed working with our young people.
“Thank you for your amazing and kind help throughout the day and your generous hospitality. Action Duchenne is a wonderful initiative and it is heartwarming to see what you enable those amazing people to do”
Saturday saw 3 different workshops from Sublime Science, Circus Skills and a DJ masterclass delivered by Sanjeev who lives with Duchenne himself.
Alongside this, there were gaming stations and lego building on the go at all times! Most importantly, the Hangout gave our teenages and young people living with Duchenne and their siblings the opportunity to be with others who truly understand.
Thank you
A huge thanks to our wonderful speakers for taking part this year and a special thank you to Pathfinders Neuromuscular Alliance for their valuable contribution to the conference content. The Conference Care team and Access Your Life team that we worked with were fantastic – always challenging and full of great ideas on what and how for their energy, always demanding the best outcomes. Thank you to all of you.
With the support from our valued sponsors, PTC Therapeutics, Sarepta, Roche, Edgewise Therapeutics, Pfizer, Dyne Therapeutics, Solid Biosciences, Italfarmaco, Regenxbio, Genenthon, Treloar’s and Sporting Bears, we were once again able to offer free conference tickets to all UK and international Duchenne families.
A big thank you to our proud Patrons, Actress Helena Bonham Carter and comedian Harry Hill, both shared messages of support for the international Duchenne community and expressed the importance of coming together at the conference.
Finally, a big thank you to our amazing Conference Committee members, trustees, volunteers and our staff team that worked tirelessly together to create the impact! I enjoyed working with you and learning from you. You have made my national director role manageable and I am so glad we had fun along the way.
Christmas Appeal
Transition from Primary to Secondary Education
We know from our work supporting families that moving from Primary to Secondary education can be really difficult for children living with Duchenne. We are thrilled to have recently received a grant from PEARS Rare Conditions grant funding via Contact, to start up our new project ‘Supporting children and young people living with Duchenne to have a positive transition from Primary to Secondary’.
How you can help
Although we have secured some funding to start these life changing support projects off, we need to make sure that we reach as many children, young people, adults living with Duchenne and their families as possible. Please think of supporting Action Duchenne in the run up to Christmas so that we can continue to provide these projects to our community.
Christmas Fundraisers
We know that now more than ever, the cost of living makes it challenging for everyone to spare that little bit extra but there are some little things you can do that would make such a difference. Here are just some ideas from our amazing supporters:Jamie is currently running a World Cup sweepstake, Sue is holding a big birthday bash fundraiser and Felicity is running 2 Christmas Wreath making workshops to raise money for Action Duchenne, and Supriya doing a storytelling advent which you can watch every day on Facebook or Instagram in December to raise money for Action Duchenne in her son Arvin’s name.
I know you’ll have lots more ideas too so please do get in touch and share your fundraising activities with us. We truly appreciate all of you who give your time, energy and support which enables Action Duchenne to provide much needed support and funding of research.
Dawn joins the Action Duchenne Family
I would like to welcome Dawn Craig to our Action Duchenne family. Dawn joins us as a Community Fundraising and Support Officer, bringing with her a wealth of experience. Dawn has a background in working with children and families with additional needs, giving her a good understanding of some of the challenges faced by our community. I am very excited to have her as part of our team and can’t wait for you all to meet her!
Save the Date
I am looking forward to meeting you again soon. Meanwhile, plans are already underway for the Action Duchenne International Conference 2023, taking place on Friday 10 and Saturday 11 November. With this in mind; please ‘save the date’ as we would be delighted to welcome you once again.
Warmest wishes,
Florence
