More than Hanging Out

More than Hanging Out

Blog by Jess Breeze, Programme Assistant

When I spent an amazing day with the Sporting Bears on 19th March, (see blog here ) I never imagined I would be fortunate enough to see how the money they raised that day would be used and the impact of their vital fundraising.

The Sporting Bears or “The Bears”, as they are affectionately known, are a dedicated group of classic and sports car enthusiasts with the primary aim – to raise money for children’s charities through dream rides and touring events.

Thank you

The Bears kindly chose Action Duchenne again as one of their three charities to support for their Midlands regional event, ‘The Restoration Show‘ at the NEC.  They raised an amazing £20,016.49 to be shared between Action Duchenne, Me&Dee and Birmingham Children’s Hospital Charity.

We used that donation to contribute towards activities for ‘The Hangout’ during our 2022 International Conference. ‘The Hangout’ is pretty much what it says on the tin, a place where young people living with Duchenne and their siblings can hangout for the weekend whilst their family members attend the speaker sessions.

Along with my colleagues Lizzie and Ravi we were tasked with putting together an activity plan. From past experience we heard Lego building and game consoles had been a huge hit. We also wanted to provide the opportunity for those that wanted to, to get involved in other activities and have something tangible that they could create and be part of.

Lots of Lego

After ordering huge quantities of Lego (although we seriously underestimated the speed and skills of their Lego building and soon realised next time we’ll definitely be ordering more!) and securing some game consoles, we also sourced The Young Film Academy, Sublime Science and Missing Link Circus skills.

Amazing Activities

Our aim was to encourage everyone to try an activity whilst ensuring no one felt forced. Gentle persuasion of a points = prizes scorecard soon had most people trying out each session.Working with the fantastic Nina and Jerry from the Young Film Academy the young people planned, acted, edited and produced their own film. Watch here to see why Isaac wanted the superpower of invisibility, how Baldur shapeshifts into an apple and their hopes and dreams for their future careers.

Sublime Science delivered a workshop of weird and wonderful science experiments, sweet and slime making. Alex the presenter allowed them to shape the session, facilitating brilliantly whilst listening & responding to all of their over-excited endless questions.  Circus Skills presenter Mr Doo entertained them with his humour and skills and had them practising juggling and plate spinning.

Sanjeev Mann, who lives with Duchenne, volunteered his time and delivered a DJ workshop demonstrating the software he uses and how he puts together tracks.  At the end of the 2 days was the excitement of selecting a prize from the prize table, based on their point score.

With a wide range of mobility, ages and skill sets it was a challenge and important to try and ensure everyone enjoyed some element of the ‘The Hangout’. So it was lovely hear Joe, who spent most of his time building Lego, shout to his parents when they’d come to check in on him, ‘I’m not leaving’ and Baldwin & Baldur who travelled from Iceland demand to their parents’ ‘we’re coming back next year’!

Thank you to all the ‘Bears’ that volunteer and dedicate their time and resources to their events raising vital funds for charities. Without the support of our fundraisers and sponsors  events like these just wouldn’t be possible. The real added value was that  young people living with this condition and their siblings got to spend a weekend, (whether it was sitting quietly building Lego, laughing during Super Mario, making slime or trying to spin a plate), with others who just ‘get it and that is priceless!