A big welcome to you all! This is my first blog piece in the run up to the Action Duchenne International Conference! Many of you will know that I’m not one to step into the spotlight, but as proud Project Manager for this event for the second year in a row, I wanted to share with you a few updates and a bit of insight into how we bring a huge event like this together!
Making a BIG impact
2021 is the 19th Annual Conference that Action Duchenne have proudly hosted. Over the past (nearly!) two decades, the event has grown, from a small meeting of Duchenne families to an internationally acclaimed event attracting hundreds of people from the international Duchenne community. It is an event that has a big impact on many people’s lives and one that our team, Trustees and volunteers work exceptionally hard to create.
I enjoyed the virtual conference. I found it relaxing to be in my own home and to watch the presentations without distraction. Having attended the conference previously I can see the value of both types of conference. Even though I did not meet other parents I feel that I have come away from the conference with increased understanding of Duchenne and reassured that I am doing the right thing for my son. It was certainly more relaxed for me this year.
Duchenne Mum 2020 feedback
We always start the planning process immediately after the previous year’s Conference, so, for example, this year’s event was talked about and planned in the sweep up meeting in November 2020. It’s always a great opportunity for us to discuss what went well and what we could improve on for next year. After all, it’s the community we create the event for, so we really do listen to your feedback!
This year was slightly different as there was so much uncertainty around large gatherings because of Coronavirus. We knew the decision to create a virtual event again was the right one, and we set to work to make the conference platform really user-friendly and immersive for you. Ultimately, our aim is to enable everyone attending the Conference to learn as much as possible, and feel part of the community together and I’m so pleased to bring you some really whizzy technology to make this a reality!
I love the fact that the videos can be viewed after the live sessions so I am able to go back to them or watch the ones I couldnt manage to at the weekend. Also its great we can let family watch these and pass on all the information.
Duchenne Parent 2020 feedback
This week, in fact, we’ll be doing a demonstration of the platform technology to our staff team, so we’re all prepared and raring to go for our first event, the Newly Diagnosed Event on 23rd October.
A warm, safe place
This event was borne out of a session we held at the last in-person Conference in 2019. On the morning before the opening welcome session, we invited a small group of newly diagnosed families together for coffee, pastries and informal chat. It was a wonderful opportunity for the families to get a gentle introduction to the conference, what to expect, who to ask for help and, most importantly, to meet fellow new families.
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 2020 feedback
In 2020, at the first virtual conference, we knew how important an event for recently diagnosed families would be, so we held the event 2 weeks before the main conference, and it was a resounding success. The Action Duchenne team shared our knowledge, hints, tips and experiences, from information about clinical trials and research to how to apply for DLA. We had the most amazing feedback from families, who loved the warmth and honest delivery from the team, and we knew we HAD to hold a similar event for 2021.
I learned something new from every session that I engaged with and cannot choose a favourite. They were all very informative.
Duchenne Parent 2020 feedback
As a staff team, we personally speak to over 2,000 Duchenne families each year and we know that the information and knowledge we share at the Newly Diagnosed event is truly life-changing for so many people. I’m so excited to invite you to come along to the afternoon event on 23rd October and join us in a warm, inclusive and safe space to get a thorough overview of Duchenne before the main Conference on 13 and 14 November.
Looking forward to updating you next time!
Sam
A bit about Sam
Samantha Turner joined Action Duchenne in May 2016. Her son, Jude (13) was diagnosed with Duchenne aged 4. In her current role as Operations Manager, she is perfecting our policies and procedures, streamlining our operations and overseeing and nurturing the team of Officers. Her proudest achievement is the work we did to support the Duchenne community over lock-down. Sam personally spoke to 2,000 families during the first 6 months of COVID-19 and was proud to provide them with support, guidance and an understanding outlet for their fears and worries (whilst simultaneously home-schooling her two children!). Recently, Sam’s eldest, Len (18) has gone to Brighton University to study Psychology with Criminology.
Read more from Sam here
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