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SMS Foundation UK
Supporting SMS families for a positive future
Latest News from the SMS Foundation
As part of Carers Week (10th – 16th June), we share the story of Laurie Grainger and her family. Laurie and her husband, Des, have dedicated their lives to caring for their youngest son, Jude, who was diagnosed with Smith-Magenis syndrome (SMS) at the age of 18 months. The Grainger family, including Jude’s siblings Shaleigh …
We are pleased to share the outline schedule for our weekend away at the Mount Cook Activity Centre this August! As you will see, we have a wonderful blend of activities and information-sharing sessions planned for everyone. Information Sessions and Main Hall Access To ensure our weekend runs smoothly, information sessions will be held in …
Earlier this week, we posted a brief survey on our Facebook page, posing the question, “What age was your child/adult when they received their diagnosis of Smith-Magenis syndrome (SMS)?” Our aim was to gather a swift snapshot of data in preparation for an article recognising the importance of Undiagnosed Children’s Day. The response was overwhelming, …
We would like to provide further information about our national event this year at Mount Cook Activity Centre from Friday 16th August through to Sunday 18th August 2024. Living with SMS can present its own set of challenges, and sometimes the greatest support comes from those who are walking a similar path. Our event will …
For over a decade, the SMS Foundation UK has been uniting families living with Smith-Magenis Syndrome (SMS) through its biennial conferences, creating a space for shared journeys and invaluable information. However, after our milestone 30th-anniversary celebration in May 2022, held at Voco St John’s Hotel in Solihull, it became apparent that our beloved event has …
Introducing a Fresh Look for 2023 We are thrilled to unveil our rebranded identity, marking a significant milestone in our journey to better serve our SMS community. Our last brand update in 2017 brought us a refreshed logo and an engaging narrative behind it, which beautifully encapsulated the essence of SMS. Nigel Over’s brilliant storytelling …
At the heart of our small charity is a big vision we are working tirelessly on to support families living with SMS. As we embark on the next chapter of our journey, we are excited to introduce our comprehensive five-year development strategy. Who We Are We are a charity dedicated to enhancing the lives of …
It is with gratitude that we acknowledge the contributions made by Nigel Over during his time as both a trustee and CEO of The SMS Foundation UK. Nigel’s journey with The SMS Foundation began in 2012 when he joined as a trustee with a visionary commitment to the mission of the organisation. His dedicated efforts …
At the SMS Foundation UK, we take immense pride in celebrating individuals who are dedicated to pursuing their aspirations. Ellen Wotherspoon, a 28-year-old from Scotland, has become a shining example of determination, resilience, and outstanding performance within the Scottish Learning Disability Sports (SLDS) community. Ellen’s journey into the world of sports began in 2010 when …
Meet Louie Martland, a remarkable 17-year-old from Wigan, Greater Manchester, who has shown incredible determination and resilience in pursuing his passion for customer service and hospitality. Louie, who is diagnosed with Smith-Magenis syndrome (SMS) began his journey during his school years which has led him to a promising future in the hospitality industry. In year …
In the pursuit of a more inclusive and supportive future for individuals and families living with SMS, we recently conducted a community survey. Our objective was to gain a deeper understanding of the needs, challenges, and experiences of our community members. The results of this survey have unveiled startling statistics that emphasise the importance of …
We are delighted to announce that we have been shortlisted for the Keele University ‘Breaking the Mould’ award in the cultivating talent category! As a Board of Trustees, for the past 10 years, we have cooperated digitally across the whole of the UK. We are fully supportive of each other and pull together to meet …
Wednesday 14th September at 11 am and 7 pm Do you have a child starting primary school, or perhaps an adult about to leave school? Transitions are a scary place for parents and carers of people with special educational needs. We want to understand what the challenges are so we can support SMS families better. …
We kick off our first summer 2022 intern project with Susan Over, who is exploring residential living options for adults with SMS. The survey (see link below) aims to discover where adults with SMS are currently living and what, if any, options were provided. The research gathered will help us build a base of evidence …
The Alex Jowitt Award is to recognise member contributions to raising awareness of Smith-Magenis Syndrome and the Smith-Magenis Syndrome (SMS) Foundation UK. Our nominations and winners for 2022 are: WINNER – Lifetime Commitment Award Clare and Evan Barker Clare and Evan Baker, year in and year out, have been a constant champion for the Smith-Magenis …
We would like to welcome 6 new interns for the summer of 2022. They will be taking on a range of topics hoping to cover some of the key themes our community has been enquiring about over the past year: Emily Allen – Genetics & Medical Management, and Physical Health Jesica Antwi – Diet and Obesity …
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 …
Do you know someone who has made an outstanding contribution to raising awareness for Smith-Magenis syndrome and the SMS Foundation? Nominate a person for the #AlexJowitt award which honours nominees for their achievements in raising awareness for our cause. The Foundation was first started as a support group in 1992 by Julie Jowitt following her …
Western Bay Adoption Service has approached us to help them find a forever home for a little girl with Smith-Magenis syndrome. They are looking for a two-parent family, or a one-parent family with a close and active support network. Details about this very special little girl can be found below or downloaded here. Adoption Profile …
We are delighted to announce that the first of two research articles for the Safe Sleeping project, commissioned by the SMS Foundation, has been published by the Orphanet Journal of Rare Diseases. The project aims to gain a better understanding of the predicaments faced by families and professionals around sleep in SMS. The outcome expected …
The SMS Foundation UK has united with a group of eight charities, writing a letter to Dr. Liam Fox and requesting a meeting in response to the proposed Down Syndrome Bill. The charities are also pressing that the scope of the proposed Bill be broadened to include all people with rare chromosome and genetic disorders …
Notification of Annual General Meeting of the Smith-Magenis Syndrome (SMS) Foundation UK CIO (1186647 &SC050921) The Trustees, as the voting members of the charity, shall meet via Zoom on Tuesday 25 January 2022 at 7pm for the charity’s AGM. Interested individuals, general members of the SMS Foundation, supporters, etc., are welcome to attend and contribute …
Please see below a selection of events and activities taking place over the next week in celebration of the International Smith-Magenis Syndrome Awareness Day on Wednesday 17th November!! We would also like to take this opportunity to thank everyone who has supported The SMS Foundation UK over the past year, please see our video message …
This is a special edition newsletter reporting on the success of the online Teddy Bears’ Picnic, earlier this year.
