It’s the final countdown!

Hello again everyone! I’m glad to be back sharing with you my updates and insights from the Conference planning coal-face! 

The newly diagnosed event was amazing

I was super-proud of the team for delivering a brilliant and insightful event for newly diagnosed families on 23 October. When we support newly diagnosed Duchenne families, often from day one of diagnosis, we find that we often cover similar topics and share similar information. From our feedback we know that families find this information valuable and supportive. So, in order to reach as many people internationally as possible, we shared this vital information and support to both newly diagnosed families and people who wanted a refresher on topics such as research and clinical trials, the science behind Duchenne, practical tips and how to get support.

It was a truly wonderful experience, the audience got involved and asked some fantastic questions. You can see me pictured above, proudly watching the team shine during that inspiring event. Days like that have such an impact on me, personally, and give me so much power for the final push before the main Conference this weekend. 

Today was a big day! The Conference platform went LIVE, which means the hundreds of people who have registered can take a look at the content and get a feel for the system. I’ve been working with our tech team to upload the fantastic pre-recorded sessions for the video library. A big thank you to all the experts and speakers who have sent me their sessions on a large range of topics from massage in Duchenne and cardiac management to respiratory and bone health in Duchenne. 

EHCP guide is LIVE

I highly recommend watching the step by step guide to EHCPs before the weekend, to get a feel for the questions you’d like to ask the expert SENCo, Clair Warner. She loved meeting you all online over lockdown and at last year’s conference so much that she kindly offered to be available to support as many people as she can after her session with the incredible Dr Natalie Truba 13:00 – 15:00 on Sunday. If you’d like to meet with Clair, we’ll be sharing a Zoom link during the session, please feel free to make the most of having such a brilliant resource at your fingertips. I can speak from experience, that Clair’s advice and help is invaluable, she is my son Jude’s expert SENCo and has made his school-life absolutely brilliant!

I’ve had the tech teams working their socks off this week, not only perfecting the platform so that it’s easy for you to find what you need, but also working on the intricacies of the running order, and making sure the look and feel of the live sessions is spot on! It’s also pretty complicated to get all the live speakers in the ‘green room’ behind the scenes, and up on your screens at the right time, but on the day the tech team’s hours of hard work will pay off, as I’m pleased to say we have had hundreds of registrations from across the globe who will come together and learn from each other. 

Social time at the conference

I’m also really pleased with how the networking area ‘The Meeting Place’ is coming together also. We know how important you find the social aspect of the conference, and at a time when we can’t all come together in person, we’ve worked hard to enable a more user-friendly, interactive way for people to meet up and talk to each other. Please make the most of this opportunity to support each other and share your experiences, not only in the breaks but also using the chat facility during the live sessions. And remember, every question is a good, valid one, so please feel confident to ask questions and share your thoughts with the panel speakers.

This weekend, our sole purpose is to help you, to feel supported, better equipped to make decisions and empowered with the knowledge you need. If you need anything, at any time this weekend, we’ve got our tech support team on hand to help, simply email actionduchenne2021@conferencecare.com or call 02476 369747. There’s also the helpdesk tab in the app, and you can contact any of the team, volunteers or trustees should you need any help. 

Before I sign off, please remember to join the evening social session on Saturday night 19:00 – 21:00 GMT with the theme ‘Living as an adult with Duchenne’, which includes an hour set with the stars of Music & Me podcast at 19:30 GMT. 

Wishing you all a great conference; get involved, share with others and enjoy being with hundreds of people who completely and utterly ‘get it’. 

Take care, Sam x