Sean’s friends and SOS Entertainment customers will remember his huge efforts to help others during the pandemic last year. But even now in 2021, the effects of 2020 are being felt by charities across the UK.

So, not content with last year’s marathon (and then some) charity bike ride, and loaning out his party van as a mobile clinic, this summer Sean’s stepping in to lend a hand to a cause close to his heart.

Last month, Sean was contacted by 1p36 Family Trust, enquiring about hiring soft play equipment for the charity’s family conference event. After looking into what was needed and finding out the situation the charity’s in, Sean came up with a package that won’t cost the charity a penny, but instead will help them to raise awareness about their cause.

Because the 1p36 Family Trust charity is a cause that not many people know about. However, many families can be affected by it, as 1p36 Deletion Syndrome is a chromosome-based condition affecting children.

Sean’s screen and stage haven’t seen much action over the pandemic, so it was fun to mock up the photos to demonstrate how the 1p36 display and streaming screens will look on Sean’s digital conferencing & disco equipment.

from family zoom calls to calls for zoom capability at the charity conference

All of the Trust’s fundraising and awareness events in 2020 were shut down due to Covid, so their funds are low. Added to this, the Family Trust’s first international conference, which aims to bring affected families together with each other and with medical experts, was postponed to 2021.

But travel restrictions are still in place and the majority of the medical experts are in the USA, where there are more incidences of the syndrome. This added to the problems for the charity, who now also need to source digital conferencing hardware as part of their planning. Having access to digital technology at the Dartford conference will allow medical experts in the USA to live stream direct to the families involved.

So Sean started thinking …

"I'm always happy to help out a charity, but this one is close to my heart because a family member has a son with 1p36.

My DJ set up and display screens we use for our parties and wedding packages can also be set up and used for digital conferencing. As the event is all about professors and specialists being able to share their knowledge and to help families with awareness, it seemed really important that the conference should go ahead, despite the extra tech headaches. So, I asked the charity if the digital conferencing set up would help?"

supporting awareness for families
1p36 fun day involves awareness for parents and fun for kids
Previous 1p36 Family Trust Fun Day, photo thanks to Becki at 1p36 FamilyTrust

Sean’s offer came as a welcome surprise (and relief) to Becki Rolleston, Chair of the 1p36 Family Trust. Becki, whose daughter was born with 1p36, is emphatic that although the NHS provides the best possible care and advice, giving families the opportunity to also hear from international experts is of huge benefit.

"The 1p36 Family Trust Conference is about empowering families to get the best from the NHS. It's also a chance for families to meet other families and be part of a parental support network. But this isn’t just about talking to others who understand the condition, it’s also about finding out what works for them and how they’ve been able to overcome hurdles and problems, for instance getting access to wheelchair services."

Because children are very much the focus of the day and going to be at the family-friendly conference, Sean’s also providing free use of his sensory soft play items throughout the conference. This means Becki will be able to have a chill-out room for the kids because, although this is an amazing conference for parents, as “kids are kids and they’ll get bored” she shared.

colourful, multisensory ball pit dome with light and sound
Sensory play - the kids' part of the day
colourful shapes and sensory soft play
And more soft play available on the day
from digital conferencing by day to fun family disco by night

UK-restrictions permitting, the conference takes place at the Double Tree Hilton, Dartford Bridge from Friday 23rd July to Sunday 25th July 2021. The evening of Saturday 24th is social time for the families, so Sean had another idea … 

" I just thought ... hang on! As I'll need to be there to set everything up for them and the equipment will remain set up overnight for use across the two days, why not make the most of it? So, I moved things around a bit and offered the families a bit of free entertainment in the evening too. It's something for the kids and their families, and hopefully something that might help them raise more money too."

So, Sean will swap his screens from displaying information and live-streams from medical speakers to sharing messages of love and images from the conference. And the speakers will turn musical rather than medical, with family favourites the kids and their families can just relax and enjoy together as they socialise for the first time in a very long time. 

In her quest to lay on a professional conference, with some family fun thrown in, Becki has found everything she needs all in one place from SOS Entertainment. And, with the pandemic having a devastating effect on raising funds to pay for the conference, Sean’s offer of support has been invaluable to the charity.

“Sean’s saved us the money that we were having trouble finding for the conference. To be honest, we’ve been working ceaselessly and I was starting to despair. Sean's donation of his time, and all his equipment actually means our conference can go ahead.

Join sean in supporting 1p36 Family Trust

If you would like to know more about the work of 1p36 Family Trust and the upcoming conference in Dartford, please:

Currently, the charity is asking for volunteers to help families with their luggage and access to the Dartford hotel venue for the conference on arrival day Friday 23rd July and departure day Sunday 25th July, so if you are able to help please contact Becki via the website or Facebook.

Leave a Reply