Hi everyone! It’s been wonderful to see all your registrations coming through this week for the pre-conference event for Newly Diagnosed families and for the main Conference! We’ve had registrations from the four corners of the world, and we’re so looking forward to bringing each and every one of you the most amazing content, knowledge and experts from across the globe!
Using technology to bring the community together
This week, we kicked off our preparations with a team briefing about the Conference app platform. It is really impressive and the technology seems to have moved on leaps and bounds, even since last year! Perhaps it’s because the world is so used to interacting with online events and meetings now, the technology is moving at a rate of knots! It’s great for us, as we’re able to utilise that technology to make it a really interactive and immersive experience for you, our amazing Duchenne community.
Win amazing LEGO sets
This week, I hope you have seen that we’ve launched this year’s LEGO Quest! Last year was a roaring success, so we just HAD to do it again! There are 8 quests, 8 prizes and everyone is invited to take part; everyone living with Duchenne, siblings, cousins, friends, schools, classes, groups, you are all welcome!
My son, Jude (14) has been off school isolating this week, so I set him off on the task of picking the prizes. He’s a LEGO fiend (he even went to the LEGO factory for his ‘Make a Wish’ and vowed to the team that he’d be back for a job when he was 18) so I thought he’d do a great job, and he has exceeded my expectations. The prizes are awesome, from Boba Fett’s Starship, to Avengers End Game Final Battle, to the Harry Potter Chess Set and the Pig House from Minecraft. There is something for everyone and you’re all invited to take part.
Simply upload your pictures to social media and tag us in #ADLegoQuest and #ADConf21 and we’re going to ask the people attending the conference to be the (anonymous) judges! We’ll be announcing the winners on Sunday 14th November and we’ll make sure the winning prizes arrive by Christmas!
Here’s the list of Quests and instructions, I can’t wait to see your entries!!
Send me your uplifting photos
This week, my eldest son, Len (18) returned from University for the first time for Jude’s birthday. I have really been missing him the past few weeks but I was so happy to have him home for a few days. It was wonderful to have the boys back together again, and we got lots of pictures of them together, living their best life (despite wanting to throttle each other before Len went off to Uni!). I’m going to be sharing these photos, along with others from our community, in a slideshow during the ‘Living with Duchenne’ session at the Conference on Sunday 14 November.
Please have a look through your phones and devices and send me some photos of your family together, so that I can share them in this session. It could be from a recent holiday, or day trip out, or even just a well-timed picture where everyone is laughing their heads off. It’s important for us to share with families the hope and positivity that underpins our incredible community, and by sharing your photos, you can be a part of this. My email is samantha@actionduchenne.org and you can send me the photos anytime up until the week before the Conference for me to include in the slideshow.
Music and Me Podcast LIVE
I’ve been so happy this week, to be working on organising the ‘Music and me’ evening with Jonny Gould and the stars of the music podcast, Sanjeev, Alex and Joshua. It takes a great deal of courage to put yourself out there on a podcast of a live event, and I’m so pleased the guys have agreed to do it. It means a great deal to me to provide a platform for these talented, yet infinitely modest people to share their awesomeness with the world and I urge you to join us for the session at 19:30 on Saturday 13th November online.
If you haven’t caught the podcasts yet, take a look here, and get a feel for what is in store in the live event.
As you can see, there’s never a dull moment in the run up to the pre-conference event for Newly Diagnosed families and the main virtual Conference in November.
If you have any questions, perhaps it’s your first time at the event, or you wish to talk through what to expect, please get in touch with me and I’ll be really happy to have a chat.
Until next time, have a great week!
Sam x
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
LEGO Quest 2021
