Firstly, we’d like to say a huge thank you to everyone who attended our SMS Bright Futures 2022 conference last weekend.
It was truly wonderful to see so many new faces, as well as those who have been part of our SMS family and community over the years. After everything we’ve all been through with Covid-19 the past couple of years, it was amazing to share company and good times with you all!
Back at SMS HQ, our feet feel as though they are finally touching the ground again after an incredibly busy few months preparing for the conference. A huge amount of work goes into planning all the sessions, topic streams, and speakers – so we really hope you found the content informative and useful. Also, a huge thank you to Caroline Richards and Ashley Liew, co-chairs of our Scientific and Clinical Advisory Board for all the help and hard work they put into planning and arranging speakers. We had over 30 speakers delivering a range of presentations on topics including sleep, genetics, behaviours, education, benefits, adult care, transitions, health, and wellbeing. We will try our best to upload presentations (where appropriate) to our website as and where we can.
Once again we were honoured to have both Ann Smith and Gail Reiner attend this year. They both bring a wealth of knowledge and experience to our conferences, and their presence is invaluable to so many families. The medical Q&A session was a wonderful opportunity for families to ask questions about their SMS health concerns with Ashley, Caroline, Gail, and Ann – thank you all so much!
As ever the evening entertainment was huge fun! Paul Brown of Magical Mayhem delighted our children and SMSers (and many adults too!) with his balloon modelling and magic show. Justin Perks did a fantastic job lighting up our 30th Anniversary Celebration dinner, and keeping many of us in the party mood with the disco and karaoke! Once again Justin closed the conference entertainment with a girls-v-boys rendition of ‘Summer Nights’ on the dancefloor, watch out Britain’s Got Talent! We were also very pleased to have visual illustrator David Lewis with us, who visually recorded one of our strategy sessions on Saturday and then spent time in the evening drawing caricatures.
We’d also like to thank our exhibitors and sponsors Abram’s Nation, Flynn Pharma, and Murray’s Medical for supporting our event.
30th Anniversary Dinner and Celebrations
This year we celebrate our 30th anniversary of connecting families, raising awareness, and building futures. The occasion was marked with a celebration dinner and the announcement of the Alex Jowitt award. The shortlist of families nominated by our community included Clare and Evan Barker, Jacqueline Jenkins, Susan Over, Lulu Willis, and Julian and Lucinda Cobby.
Clare, Evan, Danny, and Toby Barker received a lifetime achievement award for many years of raising awareness through a variety of challenging activities. Julian, Lucinda, Marty, and Theo Cobby became our current winners for all of their activities of raising awareness in Ibiza over the past year. A HUGE thank you to both the Barker and Cobby family for everything you’ve done to help raise awareness of SMS and the Foundation!
If you attended the conference we would be very grateful if you could complete our conference feedback form, it will only take 2-3 minutes. The information you provide will be helpful in understanding what worked, and what didn’t work, and useful for planning future conferences and events.
It takes a village to raise a child…
We were delighted to launch our vision for the SMS Township at our conference this year. Inspired by the old proverb ‘It takes a village to raise a child’ the SMS Township is a holistic concept aiming to identify and coordinate all the support and services a person with SMS will need during their lifetime.
To help explain the concept we have prepared a short video to explain some of the ideas we are striving to achieve.
As a charity that supports families living with Smith-Magenis syndrome, we’re already doing many of the things identified in the township concept. We are gradually gathering a wider picture of the complex issues that families (and professionals) face getting the support and services they desperately need.
We want to do more to help! We need your input to help us gather the evidence we need to see our vision come to fruition. If you are struggling to access services or support, or face particular challenges around caring for a person with SMS please share your story with us. Any information you provide will be secure and confidential and not published or used in any way that will identify anyone. Click here to share your story on our secure form.
Whilst the SMS Township is a vision for holistic support and services (and not an actual place) we believe that given time, expertise, resources, and funding some ideas like an SMS-specific clinic or adult living placement could eventually become a physical reality. To achieve this we need the input, skills, and dedication of our families and extended community. If you have lived experience, a professional skill, or time to dedicate to help us deliver a vision that will benefit families living with SMS we want to hear from you! Please use the button below to get involved.
SMS Research Takes a Step Forwards!
We are very excited to announce that we have secured seven intern placements this year that have been funded by Nationwide Building Society and Keele University. The following individuals are joining us to work on selected projects to build our knowledge and understanding around Smith-Magenis Syndrome:
Charlotte Freeman, University of Keele
Research Project: Transitions to Adult Services
Emily Allen, University of Keele
Research Project: Genetics and Medical Management, and Physical Health
Fosua Jesica Antwi, University of Keele
Research Project: Diet and Obesity
Isaac Ramsey, University of Keele
Research Project: Behaviours in Smith-Magenis Syndrome, and supporting the other project areas
Jack Medlin, University of Keele
Research Project: Education
Susan Over, University of Dundee
Research Project: Adult Residential Options
Macsen Allen-Jones, University of Cardiff
Research Project (Dissertation): Project investigating family experiences of living with a diagnosis of Smith-Magenis Syndrome