Generated by All in One SEO v4.9.0, this is an llms.txt file, used by LLMs to index the site. # SMS Foundation UK Supporting SMS families for a positive future ## Sitemaps - [XML Sitemap](https://staging.smith-magenis.org/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [News](https://staging.smith-magenis.org/news/) - [Cataracts](https://staging.smith-magenis.org/cataracts/) - What are cataracts? Cataracts are a visual impairment caused by the lens in your eye developing cloudy patches which result in blurry vision. The lens in our eyes in a healthy condition are clear and transparent however over time with cataracts these patches become progressively worse creating more blurred/Misty vision over time potentially leading to - [A Day to Remember at Avon Tyrrell](https://staging.smith-magenis.org/a-day-to-remember-at-avon-tyrrell/) - On Saturday 26th July, we hosted our second family activity day – this time in the stunning surroundings of Avon Tyrrell in the New Forest. And let me tell you, the weather gods were smiling on us – not too hot, and not too cold. Which meant perfect conditions for all the outdoor fun we - [Webinar Recording: Understanding Cerebral Visual Impairment (CVI)](https://staging.smith-magenis.org/webinar-cvi/) - The SMS Foundation UK, in collaboration with CVI Now and PRISMS.org, is pleased to host a vital and informative webinar focused on Cerebral/Cortical Visual Impairment (CVI) — a condition that affects how the brain processes visual information. Presented by experts Ali Mahady and Lacey Smith from CVI Now at the Perkins School for the Blind, this session is designed for parents and carers. - [Join Us for a Day of Connection and Adventure in Scotland! (Past Event)](https://staging.smith-magenis.org/lockerbie-event-scotland/) - SMS Family Activity Day – Sat 20th September 2025 Lockerbie Manor Outdoor Activity Centre, Scotland We’re pleased to invite SMS families from across the UK to our next Family Activity Day at Lockerbie Manor Outdoor Activity Centre on Saturday 20th September 2025. This special event is a brilliant opportunity to meet other families living with - [Webinar: Navigating the Annual Review (PAST EVENT)](https://staging.smith-magenis.org/webinar-navigating-the-annual-review/) - What Every Parent and Carer Needs to Know Don't forget to register for your space to a SEND education webinar hosted by the SMS Foundation UK. The webinar will be taking place next week (details below):🗓 Thursday 12th June🕖 7:00pm – 8:30pm💻 Online via TEAMSAll registered places will automatically receive a link to the recording of this webinar. The session will - [A Huge Thank You to Jeans for Genes](https://staging.smith-magenis.org/a-huge-thank-you-to-jeans-for-genes/) - We’re delighted to share that Jeans for Genes has awarded The SMS Foundation UK a very generous grant of £18,640. This funding will make a real difference to our community, helping us develop and expand our support for parents and carers of children and young people with Smith-Magenis syndrome. Thanks to this grant, we can - [Introducing SMS Springboard: A Research Project on the Health and Well-being of People with SMS](https://staging.smith-magenis.org/introducing-sms-springboard-a-research-project-on-the-health-and-well-being-of-people-with-sms/) - The SMS Foundation and the University of Cambridge are delighted to announce a new research initiative: SMS Springboard. This ambitious project will analyse existing healthcare data to gain insights into the health and well-being of children and adults with Smith-Magenis Syndrome (SMS). Springboard Launch Webinars Your voice matters, help shape the research by joining one - [SMS Foundation & Rareminds Specialist Counselling Service](https://staging.smith-magenis.org/sms-foundation-rareminds-specialist-counselling-service/) - The SMS Foundation UK is pleased to announce our new partnership with Rareminds, a specialist counselling service dedicated to supporting individuals and families affected by rare conditions. This collaboration marks a significant milestone in our commitment to enhancing carer support, one of our two key priorities identified through our development strategy. Understanding the Need for - [The SMS Foundation UK's Rebranding Journey](https://staging.smith-magenis.org/the-sms-foundation-uks-rebranding-journey/) - 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 - [Supporting SMS Families for a Positive Future: Our 5-Year Development Strategy](https://staging.smith-magenis.org/supporting-sms-families-for-a-positive-future-our-5-year-development-strategy/) - 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 - [Disability History Month: SMS and Our Foundation](https://staging.smith-magenis.org/disability-history-month-sms-and-our-foundation/) - Disability History Month offers a valuable opportunity to celebrate the stories of individuals, families, and organisations dedicated to supporting those living with disabilities. As our International Awareness Month in November comes to a close, we want to take this moment to share the history of Smith-Magenis Syndrome and the journey of The SMS Foundation UK—from - [Meet the Cobby Family: Their Life with SMS in Ibiza](https://staging.smith-magenis.org/meet-the-cobby-family-their-life-with-sms-in-ibiza/) - Since getting a diagnosis the Cobby family have gone above and beyond to raise awareness for SMS and to raise funds for the SMS Foundation UK. So much of what we do here at the Foundation is about learning from one another to support one another. We asked Lucinda if she was happy to share - [Webinar: Power of Attorney and Deputyship (Past Event)](https://staging.smith-magenis.org/webinar-power-of-attorney-and-deputyship/) - Tuesday 29th October 2024 19:00 - 20:00 We invite you to join us for a webinar covering the topics of Power of Attorney and Deputyship, presented by Kerry Wagner at Irwin Mitchell. Webinar Overview This will provide a brief overview of the Mental Capacity Act 2005 and its general principles, what the Court of Protection - [Webinar: A Guide to the EHCP Process](https://staging.smith-magenis.org/webinar-a-guide-to-the-ehcp-process/) - Date: Wednesday 4th December 2024Time: 19:00 - 20:00 Details A guide to navigating the process and pathways in the development of an Education Health and Care Plan (EHCP) for children and young people requiring additional support. Speaker Annette Benstead, Consultant Send Consultancy Service I have over 20 years experience in the field of Special Educational Needs - [A Carer's Journey with Smith-Magenis Syndrome](https://staging.smith-magenis.org/a-carers-journey-with-smith-magenis-syndrome/) - 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 - [Mount Cook Weekend - Schedule of Activities](https://staging.smith-magenis.org/mount-cook-weekend-schedule-of-activities/) - 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 - [Supporting Undiagnosed Children's Day](https://staging.smith-magenis.org/supporting-undiagnosed-childrens-day/) - 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, - [Katherine's Climb and the Bond of Sisterhood](https://staging.smith-magenis.org/katherines-climb-and-the-bond-of-sisterhood/) - As we celebrate National Siblings Day, we also shine a spotlight on the extraordinary bond shared between Katherine and her two sisters, Charlotte and Hannah. - [Breaking Tradition: SMS Foundation's Exciting Family Adventure Weekend in 2024!](https://staging.smith-magenis.org/breaking-tradition-sms-foundations-exciting-family-adventure-weekend-in-2024/) - 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 - [SMS Family Adventure Weekend](https://staging.smith-magenis.org/sms-family-adventure-weekend/) - 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 - [Emergency hospital documents for download](https://staging.smith-magenis.org/emergency-hospital-documents-for-download/) - Going into hospital is never an easy time for anyone, but for someone with a learning disability and complex needs, it can be extremely stressful. As the Covid-19 pandemic continues to grow it is important that we try and formulate some sort of plan should our loved-one with Smith-Magenis syndrome face staying in the hospital. - [Ellen Wotherspoon and her remarkable sporting journey](https://staging.smith-magenis.org/ellen-wotherspoon-and-her-remarkable-sporting-journey/) - 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 - [Recognising Nigel Over’s dedication to The SMS Foundation: Our heartfelt appreciation](https://staging.smith-magenis.org/recognising-nigel-overs-dedication-to-the-sms-foundation-our-heartfelt-appreciation/) - 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 - [Louie Martland: Thriving in the World of Hospitality](https://staging.smith-magenis.org/louie-martland-thriving-in-the-world-of-hospitality/) - 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 - [Bridging the Gap: Insights from the SMS Community Survey](https://staging.smith-magenis.org/bridging-the-gap-insights-from-the-sms-community-survey/) - 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 - [Lily's Dream Comes True: A Remarkable Work Experience Journey](https://staging.smith-magenis.org/lilys-dream-comes-true-a-remarkable-work-experience-journey/) - At the age of 16, Lily Stevenson has recently completed her school work experience placement at Bliss Hairdressers in Devizes, Wiltshire. This opportunity not only allowed Lily to explore her passion for hairdressing but also provided her with an invaluable boost to her confidence and personal growth. Recognising her passion for hairdressing, Silverwood School played - [Elizabeth's Inspiring Journey: Marching with Confidence on Armed Forces Day](https://staging.smith-magenis.org/elizabeths-inspiring-journey-marching-with-confidence-on-armed-forces-day/) - At just 16 years old, Elizabeth Dudley from Belton in South Yorkshire has proven that determination and an inclusive environment can turn aspirations into reality. This year, she had the opportunity to showcase her incredible spirit by participating in the Armed Forces Day Parade in Cleethorpes, North Lincolnshire. Elizabeth's involvement in the Belton and Epworth - [Launch of 'Beond' a new project with our partners at the Cerebra Network](https://staging.smith-magenis.org/launch-of-beond-a-new-project-with-our-partners-at-the-cerebra-network/) - We're delighted to announce the launch of 'Beond' a new pioneering study with our partners at the Cerebra Network. The Beond project aims to understand the behaviours of children and adults with rare genetic syndromes over their lifetime. Parents and caregivers of children and adults with Smith-Magenis Syndrome will be asked to take part in - [We've been shortlisted for an Award!](https://staging.smith-magenis.org/weve-been-shortlisted-for-an-award/) - 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 - [Transitions Community Chat (online)](https://staging.smith-magenis.org/transitions-community-chat-online/) - 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. - [Research Study into Medical and Behaviour Management](https://staging.smith-magenis.org/research-study-into-medical-and-behaviour-management/) - We want every individual with SMS to have coordinated care! For all our SMS families, care is never about a single visit to a single service. Good care seamlessly moves between services - between the GP, hospital, and back again. Sometimes this seems like an impossible goal. We want to help you through this process. - [Affection! Study Participants Needed](https://staging.smith-magenis.org/affection-study-participants-needed/) - It’s something we always say is an endearing quality in SMS, but there is virtually nothing in research to support what we know. What are the affectionate behaviours exhibited by children and adults with Smith-Magenis Syndrome? It has been suggested that individuals with Smith-Magenis Syndrome can be overly affectionate towards other people. Natasha Craven, MSc - [Does your SMSer get the support they need in their education setting?](https://staging.smith-magenis.org/does-your-smser-get-the-support-they-need-in-their-education-setting/) - Please share your EHCP/CSPs with us. We want to draw out provisions and good practice to help every individual with SMS prosper in their education. Our recent survey on education produced some startling results. 56% of our children start in mainstream education, however after three years this falls to 15% and by the start of - [Research into Residential Options for Adults with SMS](https://staging.smith-magenis.org/research-into-residential-options-for-adults-with-sms/) - 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 - [Alex Jowitt Award 2022](https://staging.smith-magenis.org/alex-jowitt-award-2022/) - 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 - [Introducing six new intern placements for 2022](https://staging.smith-magenis.org/introducing-six-new-intern-placements-for-2022/) - 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 Isaac Ramsey – - [A brief summary of The SMS Bright Futures 2022 Conference](https://staging.smith-magenis.org/a-brief-summary-of-the-sms-bright-futures-2022-conference/) - 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 - [The Alex Jowitt Award, nominations are now open!](https://staging.smith-magenis.org/the-alex-jowitt-award-nominations-are-now-open/) - 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 - [Education Survey for Primary Carers in the UK](https://staging.smith-magenis.org/education-survey-for-primary-carers-in-the-uk/) - The SMS Foundation is trying to build an accurate picture of education provision across the UK. We need this information to help us understand some of the issues that families face. This will help us identify what the problems are, and how we can work towards successful outcomes for young people with SMS. The survey - [Are you considering adopting a child with Smith-Magenis syndrome?](https://staging.smith-magenis.org/are-you-considering-adopting-a-child-with-smith-magenis-syndrome/) - 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 - [Caregivers' experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases](https://staging.smith-magenis.org/caregivers-experience-of-sleep-management-in-sms-research-study/) - 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 - [Conference 2021 Announcement](https://staging.smith-magenis.org/conference-2021-announcement/) - A Conference Like No Other Yes, we are still planning to hold an in-person conference on 1st & 2nd May 2021, subject to the easing of COVID-19 restrictions and receiving the necessary permissions for it to go ahead. We are expecting that there will be strict protocols required for the conference to be able to - [Charities write a letter to Dr. Liam Fox over concerns about Down Syndrome Bill](https://staging.smith-magenis.org/charities-write-a-letter-to-dr-liam-fox-over-concerns-about-down-syndrome-bill/) - 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](https://staging.smith-magenis.org/notification-of-annual-general-meeting/) - 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 - [Celebrating International SMS Awareness Day](https://staging.smith-magenis.org/celebrating-international-sms-awareness-day/) - Celebrate and connect with the SMS Community Join us and raise a glass on 17th November at 9 pm to celebrate the International Smith-Magenis Syndrome Awareness Day. We're also excited to announce that the wonderful Ann Smith will also be joining us for this virtual event. Details for this event and the zoom link can - [Teddy Bears' Picnic Feedback - Survey closes on 16th May](https://staging.smith-magenis.org/teddy-bears-picnic-feedback-survey-closes-on-16th-may/) - Our Teddy Bears' Picnic survey ends on Sunday 16th May and we need your help! Can you spare some of your valuable thoughts so that we know how much fun you got from our event, and help us to make improvements for future events? Please click here for the survey. The survey takes less than 7 minutes to - [The SMS Stay Awake Challenge is back!](https://staging.smith-magenis.org/the-sms-stay-awake-challenge-is-back/) - Join Team SMS on Saturday 19 and Sunday 20 June 2021 to take part in our SMS Stay Awake Challenge! As part of our SMS Fulfilling Futures Appeal, we are asking our SMS community, friends, families, colleagues and schools to join us in staying awake all night (handily on the shortest night of the year ?) to raise - [Ciara Harvie becomes Charity Ambassador For SMS Foundation](https://staging.smith-magenis.org/ciara-harvie-becomes-charity-ambassador-for-sms-foundation/) - [Sunlight & Nightshade - A Video About SMS Behaviours](https://staging.smith-magenis.org/sunlight-nightshade-video-sms-behaviours/) - Sunlight & Nightshade is a video about some of the behaviours associated with Smith-Magenis syndrome, and in this film we ask a number of different families the following questions: Can you tell me the best two things about living with or caring for someone with SMS?Can you tell me the two most challenging things about - [That Defining Moment - A Video about Diagnosis](https://staging.smith-magenis.org/defining-moment-video-diagnosis/) - In the lead up to the international SMS awareness day (17th November), each week during October, the SMS Foundation UK are releasing a short film about living with Smith-Magenis syndrome. The next short film in our series is titled 'That Defining Moment' and broadly focuses on the diagnosis and early planning aspects of Smith-Magenis syndrome. This - [Bright Stars Shining a Light - A Video about living with SMS](https://staging.smith-magenis.org/bright-stars-shining-light-video-living-sms/) - The final film in our series! Bright Stars Shining a Light is a video about living with someone with Smith-Magenis syndrome, and in this film we asked a number of different families the following questions: What do they like to do for fun?Describe your child in three wordsWhat is your child's favourite TV show? This - [Sweet Dreams & Survival - A Video about SMS Sleep](https://staging.smith-magenis.org/sweet-dreams-survival-video-sms-sleep/) - We are delighted to release the third film in our series. Sweet Dreams & Survival is a video about the sleep difficulties associated with Smith-Magenis syndrome, and in this film we ask a number of different families the following questions: Describe their bedroom or night time routineDo you receive much support for respite in your - [Newsletter Summer 2021](https://staging.smith-magenis.org/newsletter-summer-2021/) - This is a special edition newsletter reporting on the success of the online Teddy Bears’ Picnic, earlier this year. Download Newsletter Summer 2021 - [Fulfilling Futures - We need your help](https://staging.smith-magenis.org/fulfilling-futures-we-need-your-help/) - Supporting families for nearly 30 years Since 1992, the SMS Foundation UK has helped over 300 families who have been diagnosed with SMS. During COVID-19, demand for our services increased more than ever, and we provided over 265 hours of support and advice, an increase of 167%, and hosted 236 virtual support sessions. This vital - [Teddy Bears' Picnic - schedule for the weekend](https://staging.smith-magenis.org/teddy-bears-picnic-schedule-for-the-weekend/) - You are invited to join us for our Virtual Teddy Bears’ Picnic. We have lots of activities over the weekend where you can join us online. All links to zoom meetings will be shared on our Facebook and Twitter pages, and published (in this post) on our website ahead of the event. The links will - [300 picnic boxes make their way to UK SMS members](https://staging.smith-magenis.org/300-picnic-boxes-make-their-way-to-uk-sms-members/) - 300 picnic boxes are gradually making their way to all the people with Smith-Magenis syndrome on our UK membership list. The aim of the picnic boxes is to encourage as many people within our SMS community to join in our virtual event 'Teddy Bears' Picnic' which will be taking place over the weekend of 1st - [Easter Card and Invitations sent to UK SMS Members](https://staging.smith-magenis.org/easter-card-and-invitations-sent-to-uk-sms-members/) - In the lead-up to our next virtual event, the 'Teddy Bears' Picnic' on the 1st and 2nd May, the SMS Foundation has recently sent out approximately 300 Easter cards to every person on our UK membership with Smith-Magenis syndrome. Also included with the Easter cards was a written personal invitation for the virtual picnic event. - [This week's community Zoom drop-in chat with Jayne Dainty of SOS Care Services](https://staging.smith-magenis.org/this-weeks-community-zoom-drop-in-chat-with-jayne-dainty-of-sos-care-services/) - This week's community Zoom drop-in chat is with Jayne Dainty of SOS Care Services. Jayne will be sharing her insights into meeting the needs of those with SMS from a care provider's perspective? Drop-in for Tea at Two (2 pm) and/or Whine with Wine at Nine (9 pm) on Thursday 14 January 2021. Jayne and - [SMS Foundation UK Conference Cancelled for 2021](https://staging.smith-magenis.org/sms-foundation-uk-conference-cancelled-for-2021/) - At the start of this week the UK Government announcements placed the UK into the highest COVID-19 Alert Level. The published de-escalation strategies are such that it is inconceivable that the country can be at the National Alert Level and Local Tier Levels for the UK conference to happen on 1st & 2nd May 2021. - [Natasha Craven Shortlisted for 'Best Student Contribution’ to a Small to Medium-sized Employer award!](https://staging.smith-magenis.org/natasha-craven-shortlisted-for-best-student-contribution-award/) - Natasha Craven, who joined the Smith-Magenis Syndrome Foundation UK team in October 2020, has successfully been shortlisted as one of the top five in the 'Best Student Contribution' to a Small to Medium-sized Employer award! The award recognises the student who has exceeded expectations and genuinely made a significant impact to the small organisation as a - [December Newsletter](https://staging.smith-magenis.org/december-newsletter/) - Connecting Families | Raising Awareness | Building Futures Our December 2020 newsletter is here! Providing you with the latest information from the Smith-Magenis Syndrome Foundation UK, this edition includes the following: Regional Representatives ProgrammeStaff MattersUK Demographics StudyConference 2021Our Fundraising During CoronavirusHow We Continue To CareGenny Bear Download December 2020 Newsletter - [Announcement of AGM](https://staging.smith-magenis.org/announcement-of-agm/) - Announcement of the General Meeting for: 1186647 The Smith-Magenis Syndrome (SMS) Foundation UK CIOSC044841/1072573 The Smith-Magenis Syndrome (SMS) Foundation UK The Board of Trustees hereby announce the calling of the General Meeting of these charities to take place on Tuesday 12 January 2021 at 6:30pm. The voting members (the Trustees) shall consider statutory governance matters - [Outline 2019 Conference Schedule](https://staging.smith-magenis.org/outline-conference-schedule/) - We are pleased to publish our outline schedule for the 2019 conference. Further details of the speakers and their presentations will be available leading up to the conference. Outline Schedule at a Glance Friday 15.00 Registration 15.30 - 17.30 Sleep Safely Care Giver Focus Group 19.00 - 20.30 Newbies / Newly Diagnosed Welcome Dinner 19.30 - [Win a loan of a Safety Sleeper for 2 weeks](https://staging.smith-magenis.org/win-a-loan-of-a-safety-sleeper-for-2-weeks/) - As our current Smith-Magenis syndrome facts have been about sleep we are delighted to announce a draw on behalf of Murrays Medical UK, who are offering 2 families the chance to take the Safety Sleeper on loan for up to 2 weeks. You can either try out at home or use for a holiday at - [The SMS Foundation introduces Natasha Craven as our Research and Admin Assistant](https://staging.smith-magenis.org/the-sms-foundation-introduces-natasha-craven-as-our-research-and-admin-assistant/) - Natasha Craven joined us at the start of October 2020 on a part-time basis as our Research and Admin Assistant. Having completed two years of a BSc in Biomedical Science, Natasha has developed excellent research and analytical skills, becoming extremely competent in data handling. Within the degree there is a module titled ‘Human Genetics’, giving an introduction to medical genetics, learning about genetic disorders caused - [Nigel Over wins the 'Terrific Trustee' category at SCVO Charity Awards 2020](https://staging.smith-magenis.org/nigel-over-wins-the-terrific-trustee-category-at-scvo-charity-awards-2020/) - We are thrilled to announce that tonight's winner of the 'Terrific Trustee' category at the SCVO Charity Awards is our very own Nigel Over! The award recognises Nigel's tireless contribution and efforts as a trustee, where he has brought vision and practical solutions to resolve many issues the charity has faced. Over the past 6 - [UK Demographics Study](https://staging.smith-magenis.org/uk-demographics-study/) - [Five top tips to help maintain wellbeing during lockdown](https://staging.smith-magenis.org/five-top-tips-to-help-maintain-wellbeing/) - Maintaining wellbeing – both mental and physical – is incredibly important for children and adults with Smith-Magenis Syndrome, as well as their families around them. Here, we’ve highlighted five top tips to maintain wellbeing and we speak to one family who’ve been able to make the most of exercising while in lockdown. Eating well Keeping - [SMS family face continued distress due to Covid-19 restrictions in care home](https://staging.smith-magenis.org/sms-family-faces-continued-distress-due-to-covid-19-restrictions-in-care-home/) - On 23rd March 2020, Boris Johnson told the country that people ‘must’ stay at home and certain businesses must close. The impact of this was felt in every corner of society as life 'as-we-knew-it' came to an abrupt pause and social interaction with anyone living outside our home was denied. People who were considered 'clinically - [Connecting Families - Regional Representatives](https://staging.smith-magenis.org/connecting-families-regional-representatives/) - Announcing our new network of regional representative to be there for families, who just ‘get it’ from lived experience of Smith-Magenis syndrome. Use local knowledge to provide support and guidance to families. Build awareness of Smith-Magenis syndrome in your area. Help with regional events that bring our community together. Volunteers wanted for some regions. Do you have - [Yorkshire Three Peaks raises over £10k](https://staging.smith-magenis.org/yorkshire-three-peaks-raises-over-10k/) - A group of 30 friends who took part in the Yorkshire Three Peaks challenge on Saturday 16th August have raised over £10k (online and offline fundraising) in funds for the Smith-Magenis Syndrome Foundation, a truly fantastic result! The amazing expedition was organised by Craig Thomas, friend of Matthew Sutton and his family whose eight-year-old daughter Grace - [Be Distance Aware Shield](https://staging.smith-magenis.org/be-distance-aware-shield/) - The Distance Aware shield is a national initiative to enable individuals and organisations to politely prompt ongoing distancing and respect of individual social space. With the easing of lockdown, many charities across the UK have adopted the shield and adapted it with their own logos so that members of their community (particularly those who are vulnerable - [Nigel Over 'Terrific Trustee' finalist in SCVO Awards](https://staging.smith-magenis.org/nigel-over-terrific-trustee-finalist-in-scvo-awards/) - Our very own Nigel Over has been selected as a finalist in The Scottish Council for Voluntary Organisations (SCVO) 2020 charity awards, for his years of dedication as a trustee to The Smith-Magenis Syndrome Foundation UK. For over 35 years, Nigel Over has been involved in the running of, or contributing towards numerous charities where - [Yorkshire Three Peaks Challenge](https://staging.smith-magenis.org/yorkshire-three-peaks-challenge/) - A new fundraiser to undertake the Yorkshire Three Peaks Challenge has been set-up by Craig Thomas, friend of Matthew Sutton and his family whose eight-year-old daughter Grace has Smith-Magenis Syndrome. Speaking about support for families with children with SMS, Matthew revealed that he is in frequent contact with other families via a WhatsApp group where - [SMS Demographic Profile Study is launched](https://staging.smith-magenis.org/sms-demographic-profile-study-is-launched/) - The Smith-Magenis Syndrome (SMS) Foundation UK is pleased to announce the commencement of a study to provide a definitive demographic profile of syndrome diagnosis across the UK. This is to assist the charity in: Establishing the actual diagnosed population with Smith-Magenis syndrome. Incident rate is estimated at 1 in 15-25,000, which would suggest up to 4,500 people in - [Sunset, Moonlight and Sunrise - Teddy Bear's Picnic](https://staging.smith-magenis.org/sunset-moonlight-and-sunrise-teddy-bears-picnic/) - Date: Saturday 20th June 2020Time: All-day event (at a time convenient for you)Venue: Your home/garden (or a socially-distant space) Get involved, raise awareness, and support your SMS Foundation. There are three different ways you can join-in, including: 1. Order an SMS Picnic Box & Fundraising Pack Our SMS Picnic Box is packed with fun things to - [Early summer newsletter](https://staging.smith-magenis.org/early-summer-newsletter/) - Connecting Families | Raising Awareness | Building Futures Our early summer 2020 newsletter is here! Providing you with the latest information from the Smith-Magenis Syndrome Foundation UK, this edition includes the following: Our community support Zoom callsDesign 'Genny Bear' competitionInformation and Support Service updateFundraising during CoronavirusMia's storyHow our funds can helpFuture eventsConference 2021 Early summer newsletter - [The 2.6 Challenge](https://staging.smith-magenis.org/the-2-6-challenge/) - We would like to thank all of our supporters who recently took part in the 2.6 Challenge to raise money for The Smith-Magenis Syndrome Foundation UK. The total amount raised collectively for charities is £10,126,618.49. The 2.6 Challenge is now closed. The 2.6 challenge was set up as a response to help save charities during - [Songs Make Smiles Concert](https://staging.smith-magenis.org/songs-make-smiles-concert/) - SMS Foundation ambassador Ciara Harvie will be holding a Facebook Live concert (go to Ciara Harvie - Music’ Facebook page) on Sunday 3rd May at 4 pm (BST). What better way to shake off the Covid-19 blues and ‘Let it Go’ with family, friends and beautiful music - all from the comfort of your home! - [Launch of #SMSBearHugandBeHugged Campaign](https://staging.smith-magenis.org/launch-of-smsbearhugandbehugged-campaign/) - The #SMSBearHugandBeHugged fundraising and awareness campaign has been launched by the SMS Foundation this weekend, on the fundraising website 'Support My Smile'. The campaign will feature a range of family-friendly activities and fundraising events over the coming months, all themed around 'teddy bears'. The campaign starts on the weekend 2nd and 3rd May with the - [Our Spring 2020 Newsletter](https://staging.smith-magenis.org/our-spring-2020-newsletter/) - Connecting Families | Raising Awareness | Building Futures Welcome to our Spring 2020 newsletter providing you with the latest information from the Smith-Magenis Syndrome Foundation UK, this edition includes the following: The future of our Foundation - Our vision and mission Meet your senior management team The Trustees Our information and support service, plans for - [The Smith-Magenis Syndrome (SMS) Foundation UK introduces Helen Hargrave as our Fundraising Manager](https://staging.smith-magenis.org/the-smith-magenis-syndrome-sms-foundation-uk-introduces-helen-hargrave-as-our-fundraising-manager/) - Having worked in the charity sector since 2010, Helen has spent the past five years in senior management fundraising positions for a variety of charitable causes, incorporating small local charities including Richard House Children’s Hospice through to national organisations including Maggie’s, Shelter and Diabetes UK. Within the third sector, Helen has worked across a number - [CEO Announced for The Smith-Magenis Syndrome (SMS) Foundation UK](https://staging.smith-magenis.org/ceo-announced-for-the-smith-magenis-syndrome-sms-foundation-uk/) - For over 35 years, Nigel Over has been involved in the running of, or contributing towards numerous charities where he holds a personal interest. His dedication has seen him devote a considerable proportion of his time and effort to the benefit of the widest communities actively contributing to national and local charities including, the British - [Information and Communications Manager Announced for Smith-Magenis Syndrome (SMS) Foundation UK](https://staging.smith-magenis.org/information-and-communications-manager-announced-for-smith-magenis-syndrome-sms-foundation-uk/) - The Smith-Magenis Syndrome (SMS) Foundation UK introduces Leeann Stevenson as our Information and Communications Manager. For the past eight years, Leeann has been at the heart of our communications, information and branding as a Trustee of the charity. The transformation of the charity in this time has been exceptional. Leeann’s dedication has resulted in the - [Charity Commission approval for CIO](https://staging.smith-magenis.org/charity-commission-approval-for-cio/) - Following the vote by members in favour of converting the Foundation from an unincorporated registered charity to a Charitable Incorporated Organisation (CIO) at our EGM on 16 November 2019, we are pleased to announce that the Charity Commission has accepted our application and has granted registration as The Smith-Magenis Syndrome (SMS) Foundation UK CIO, Charity - [Smith-Magenis Syndrome Foundation UK - EGM Notice](https://staging.smith-magenis.org/smith-magenis-syndrome-foundation-uk-egm-notice/) - The Trustees of the Smith-Magenis Syndrome (SMS) Foundation UK are calling an Extraordinary / Special General Meeting (EGM) for 10:30 am Saturday 16 November, at the Aldingbourne Country Centre in Chichester. The meeting will be followed with an opportunity to join other SMS families at the centre. Booking details are below. The purpose of the - [Our 2020 Vision](https://staging.smith-magenis.org/our-2020-vision/) - Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community. Our mission is that the Smith-Magenis Syndrome (SMS) Foundation UK shall be at the heart of our community of individuals, families, carers and professionals living and working with Smith-Magenis Syndrome and we will be the first point of contact - [Sleep Safely - Your Help Needed!](https://staging.smith-magenis.org/sleep-safely-your-help-needed/) - The SMS UK Foundation has commissioned a project to understand the requirements for sleeping safely and the potential solutions for this to happen. We need the help of our global SMS families. If we could capture the sleep experiences of every SMS family, or as many as possible, then we would have a significant body - [Dates for 2019 Conference Announced](https://staging.smith-magenis.org/dates-for-2019-conference-announced/) - The 2019 SMS Foundation UK Conference Friday 3rd May – Monday 6th May Following the successes of our 2015 and 2017 conferences, we shall be returning to the familiar surroundings of The St John’s Hotel in Solihull. Registration is now open, please visit our conference website for more information and fill in the online registration form - [Team of SMS Dads Complete 3 Peaks Challenge](https://staging.smith-magenis.org/team-of-sms-dads-complete-3-peaks-challenge/) - On 23rd August, a group of 19 Dads that have children with Smith-Magenis syndrome completed the epic '3 Peaks Challenge' to raise money and awareness for SMS. The event involved trekking up the highest mountain in Scotland, England and Wales and is considered one of the ultimate tests of physical endurance, mental stamina and teamwork. - [Melatonin Application Rejected by SMC](https://staging.smith-magenis.org/melatonin-application-rejected-by-smc/) - The Scottish Medicines Consortium (SMC) has rejected the application to recommend prolonged-release melatonin (Slenyto®) as a treatment for insomnia in children with autism spectrum disorder and/or Smith-Magenis syndrome (SMS). The decision was based on uncertainty that this medicine would offer value for money to NHS Scotland. The wider implication is that the SMC are saying - [Don't get cut off](https://staging.smith-magenis.org/dont-get-cut-off/) - The General Data Protection Regulations, which are a government law, are changing on 25th May 2018 and we have got to make sure that any information that we have about you is held correctly so that we can continue being in contact with you. We don’t pass any of your details onto anybody else and - [SMS Foundation 2018 AGM and Members Event](https://staging.smith-magenis.org/sms-foundation-2018-agm-members-event/) - Saturday 5th May 2018 Conkers - Award winning attraction at the heart of the National Forest We are delighted to announce that we will be holding our AGM at Conkers in Derbyshire on Saturday 5th May. Entry to the attraction Conkers is from 10am - 4pm and will be free of charge to adult members - [World SMS Awareness Day and our 25th Anniversary](https://staging.smith-magenis.org/world-sms-awareness-day-25th-anniversary/) - It's World Smith-Magenis Syndrome Awareness Day, and the SMS Foundation UK are also celebrating our 25th anniversary - DOUBLE CELEBRATION! Across the UK the SMS Foundation have been encouraging and helping to fund parties so that families can connect, share stories and celebrate life living with SMS. A number of events have been organised by - [A huge "Thank You" to our Jeans for Genes fundraisers](https://staging.smith-magenis.org/huge-thank-jeans-genes-fundraisers/) - We would like to say a huge "Thank You" to all those that helped to support last weeks Jeans for Genes Day and the Smith-Magenis Syndrome Foundation. The day was a huge success as schools and workplaces pulled on their jeans to raise awareness and funds for people with genetic disorders. Some of the schools - [Mum speaks of son’s genetic disorder for Jeans for Genes Day](https://staging.smith-magenis.org/mum-speaks-sons-genetic-disorder-charity-day/) - Joanne Martland and her son Louie are currently featuring in local newspaper, Wigan Today, to help raise awareness for Jeans for Genes day and Smith-Magenis syndrome. Jeans for Genes day is on Friday 22nd September and the Smith-Magenis Syndrome Foundation have partnered with the charity to help increase awareness. In the article Joanne describes her - [Video star Riley helps make people aware of syndrome](https://staging.smith-magenis.org/video-star-riley-helps-make-people-aware-syndrome/) - A BOGNOR REGIS family of a little boy with a rare genetic disorder has been chosen to front a national charity campaign. Riley Pearson, six, has Smith Magenis Syndrome, to mean he has severe behavourial problems. Along with his dad, Mick, he has become the face of the fundraising bid by Jeans for Genes. The - [The Marlborough family of Lily Stevenson have been chosen to front a campaign for national charity Jeans for Genes](https://staging.smith-magenis.org/marlborough-family-lily-stevenson-chosen-front-campaign-national-charity-jeans-genes/) - A Wiltshire family with a child with a rare genetic disorder have been chosen as the face for the online campaign #dreamforgenes. The campaign is to encourage schools to sign up for Jeans for Genes Day - when children and adults wear jeans for the day in exchange for a small donation to the charity. - [The Story Behind the New SMS Foundation Logo](https://staging.smith-magenis.org/the-story-behind-the-new-sms-foundation-logo/) - Let me explain Smith-Magenis Syndrome (SMS) through our logo; the Sun, Moon and Stars. The sun and moon represents the body clock. In Smith-Magenis Syndrome the body clock, the circadian rhythm, is flipped. Our children naturally want to be awake at night and asleep during the day. We recognise that our children don’t have a - [Cerebra Sleep Conference – Tackling Sleep Disturbances in Children with a Learning Disability](https://staging.smith-magenis.org/cerebra-sleep-conference-tackling-sleep-disturbances-in-children-with-a-learning-disability/) - Our one day conference on sleep in children with brain conditions will disseminate the findings of recent sleep research and and consider the implications for parents, carers and professionals. The conference will launch new information resources that the our Sleep Team, together with the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham, have developed - [Dates for SMS Conference 2017 Announced](https://staging.smith-magenis.org/dates-for-sms-conference-2017-announced/) - Following the success of our last conference in 2015, we shall once again be returning to the St Johns Hotel in Solihull, from Fri 29th Apr – Mon 1st May 2017. The format will remain the same, with the main conference days as Saturday and Sunday. There will be entertainment on both Saturday and Sunday - [Newly Updated SMS Booklet Published](https://staging.smith-magenis.org/launch-of-revised-sms-booklet/) - A big thank you to Capital Document Solutions in Edinburgh for printing of copies of the SMS Booklet ready for this weekend's conference. A special mention to Joyce Campbell who did all the hard work at Capital Document Solutions to make this happen and Mark Harvie for arranging for this to be done. - [SMS Trustees Working with Enable Scoop Charity Award](https://staging.smith-magenis.org/sms-trustees-working-with-enable-scoop-charity-award/) - A huge congratulations to our very own trustees Nigel Over and Hazel Wotherspoon, part of a committee of 8 people, and winners of the award Cracking Campaign of the Year, this week at the Scottish Charity Awards run by the SVCO. The ‘#IncludED in the Main’ campaign was set up by the charity Enable Scotland. ## Pages - [Supporting SMS families for a positive future](https://staging.smith-magenis.org/) - We are a small charity that supports families living with Smith-Magenis syndrome (SMS) What is SMS? Together we spread awareness, together we grow. Share your most creative tea towel photo for a chance to win an SMS hoodie and £25 Amazon voucher. Closes 14th November 2025. Get your tea towel! Latest News and Events Information - [News & Events](https://staging.smith-magenis.org/news-2/) - [Blog](https://staging.smith-magenis.org/blog/) - [Information & Resources](https://staging.smith-magenis.org/information-and-support/) - [Adults Living with SMS](https://staging.smith-magenis.org/information-and-support/adults-living-with-sms/) - [Sleep & Behaviours](https://staging.smith-magenis.org/information-and-support/sleep-behaviours/) - [Health & Medical](https://staging.smith-magenis.org/information-and-support/health-medical/) - [Parent & Carer Advice](https://staging.smith-magenis.org/information-and-support/parent-carer-advice/) - [Seizures and SMS](https://staging.smith-magenis.org/information-and-support/health-medical/seizures/) - Did you know that epilepsy is a neurological condition that affects over 50 million people worldwide? A small study1 in 2006 estimated that around 30% of people with Smith-Magenis syndrome (SMS) suffer from seizures, and 50% identified as having abnormal EEG results (most of which were epileptiform. Seizures come in various forms, each impacting individuals - [Navigating the EHCP Process: Webinar Recording](https://staging.smith-magenis.org/information-and-support/navigating-education/the-ehcp-process-webinar-recording/) - Watch our most recent webinar recording, packed with expert guidance on the Education, Health and Care Plan (EHCP) process – now available to view on demand. We know that for families of children with Smith-Magenis syndrome, navigating the special educational needs system can be an exhausting and confusing experience. That’s why we brought in SEND - [Support For Families Reaching Crisis Point](https://staging.smith-magenis.org/information-and-support/parent-carer-advice/support-for-families-reaching-crisis-point/) - Families of children with Special Educational Needs (SEN) may at times reach a crisis point, where behaviours and challenges feel overwhelming and difficult to manage safely at home, in school, or in the community. For many, this crisis arises when existing support that is typically offered by the family or support services, is no longer - [Facts about SMS](https://staging.smith-magenis.org/information-and-support/understanding-sms/facts-about-smith-magenis-syndrome/) - A series of factual videos from parents, carers, and professionals who live and work with people that have Smith-Magenis syndrome. When was Smith-Magenis syndrome discovered, and who first described the characteristics? Recently retired senior genetic counsellor Ann Smith talks about how and when SMS was first discovered. What are the other names people use to - [Understanding SMS](https://staging.smith-magenis.org/information-and-support/understanding-sms/) - [EHCPs: A Guide for SMS Parents and Carers](https://staging.smith-magenis.org/information-and-support/navigating-education/ehcps-a-guide-for-parents/) - Navigating the Education, Health, and Care Plan (EHCP) process can be confusing and frustrating—especially if you’re caring for a child with Smith-Magenis Syndrome (SMS). The legal language, inconsistent support from local authorities, and endless paperwork often leave families overwhelmed. That’s why we’ve created a clear, practical, and parent-informed guide:“Smith-Magenis Syndrome and EHC Plans: A Guide - [Navigating Education](https://staging.smith-magenis.org/information-and-support/navigating-education/) - [Who we are](https://staging.smith-magenis.org/about-us/) - Our team of trustees, volunteers, and staff are represented by 16 parents of children and adults with SMS and bring a wealth of lived experience of the syndrome. We also have a strong team of dedicated volunteers who contribute their valuable time to support our cause with their professional experience and expertise. The SMS Foundation - [Support for Professionals](https://staging.smith-magenis.org/support-for-professionals/) - Get in Touch Leave a message on our answerphone: 0300 101 0034 or email us: support@smith-magenis.co.uk. Enquiries Seek guidance or training by sending your request through our enquiry form. Professionals Enquiry Form. SMS Awareness Training for Professionals Our training is designed to help professionals in schools, respite care, and supported living understand and better support - [Support for Parents & Carers](https://staging.smith-magenis.org/support-for-parents-and-carers/) - Get in Touch Leave a message on our answerphone: 0300 101 0034 or email us: support@smith-magenis.co.uk. Enquiries Seek advice, guidance or support by sending your request through our enquiry form. Parent & Carers Enquiry Form. Emotional Support Find out more about our counselling support partnership with Rareminds and how it can help you look after - [Get Support & Advice](https://staging.smith-magenis.org/get-support/) - Get advice, specialised support, or just find someone to talk to. Support for Parents & Carers Get professional support including advice, guidance, or training. Support for Professionals Information and Guidance Explore our articles, guides, and resources about life with Smith-Magenis syndrome. Medical and Health Education Articles - [Become a member](https://staging.smith-magenis.org/become-a-member/) - Join to become a family, or professional, member of The SMS Foundation UK. You will receive updates on any social meetings, conferences, and fundraising events that are going on! Joining is quick, easy, and free! There are some private/closed groups on social media platforms that are moderated by volunteers and members of the community. There - [Contact Us](https://staging.smith-magenis.org/contact-us/) - Speak to a member of our team by leaving a message on our helpline. 0300 101 0034 Please note: We aim to respond to messages within 48 hours. Parent/Carer Enquiries If you need advice, support, or just someone to listen, get in touch. Parent/Carer Enquiry Form Professional Enquiries If you need advice, guidance, or training get in - [SMS Awareness Tea Towel Campaign 2025](https://staging.smith-magenis.org/tea-towel-2025/) - It’s back again – our new Awareness Tea Towel Campaign for 2025! This year’s theme is:“Together we spread awareness, together we grow.” The tea towel campaign is all about raising awareness of Smith-Magenis syndrome in the lead-up to our Global SMS Awareness Day on 17th November. To make things even more exciting, we’re running a - [SEND Consultancy Service](https://staging.smith-magenis.org/send-consultancy-service/) - Expert guidance on your SEND journey The SMS Foundation UK has partnered with the SEND Consultancy Service to ensure families living with Smith-Magenis syndrome can access expert advice and guidance on education, health, and care. We know that navigating the SEND system can often feel overwhelming, and every child’s journey is different. That’s why we’ve - [Rareminds Counselling Service](https://staging.smith-magenis.org/counselling/) - Living with Smith-Magenis syndrome can bring many unique challenges, and looking after your own wellbeing is just as important as caring for your child or loved one. That’s why the SMS Foundation UK has partnered with Rareminds, a specialist counselling organisation supporting families living with rare conditions. Rareminds are highly experienced in offering emotional support - [Policies and Documents](https://staging.smith-magenis.org/about-us/policies-and-documents/) - Policies Privacy Policy Safeguarding Policy Terms and Conditions SMS Disclaimer Equality, Diversity & Inclusion Policy Social Media Usage and Policy Documents 5-Year Development Strategy Media and Logo Usage Guidelines - [Fundraising & Events](https://staging.smith-magenis.org/how-you-can-support-us/fundraising-events/) - Take part in an event with team SMS! Your support makes all the difference in helping us support families living with SMS. Whatever challenge you take on, we’re here to support you all the way! Please see our latest fundraising events for supporters to take part in. Current Challenge and Fundraising Events All our spaces - [SMS Family Activity Day 2025](https://staging.smith-magenis.org/avon-tyrrell/) - We’re excited to invite families to a special weekend at Avon Tyrrell Outdoor Centre, designed for individuals with SMS, their siblings, and their families. Enjoy a mix of outdoor activities, information-sharing sessions, and time to connect with others in the SMS community. This year’s adventure line-up includes exciting activities such as canoeing, zip wire, tree - [Meet the Trustees](https://staging.smith-magenis.org/about-us/meet-the-trustees/) - Hazel Wotherspoon - Chair Person Hazel Wotherspoon is a mum of 4 young adults, 3 of whom have significant disabilities; her daughter Ellen has SMS. Hazel worked as a physio, mainly paediatrics for 27 years before leaving work to become a full-time carer. She has been involved with the Foundation for many years first as - [Annual Reports](https://staging.smith-magenis.org/annual-reports/) - Please find below links to our Annual Reports. SMS UK 1186647 Annual Report 2024 SMS UK 1186647 Annual Report 2023 SMS UK 1186647 Annual Report 2022 SMS UK 1186647 Annual Report 2021 SMS UK 1072573 Annual Report 2021 SMS UK 1186647 Annual Report 2020 SMS UK 1072573 Annual Report 2020 SMS UK Foundation Annual Report - [Meet the Staff](https://staging.smith-magenis.org/about-us/meet-the-staff/) - Leeann Stevenson Communications Manager and Programmes Lead Leeann Stevenson has been a dedicated member of the SMS Foundation UK team since it became a CIO in 2020. Before joining as a staff member, she served as a trustee for eight years. Initially stepping into the role of Communications and Information Manager, Leeann played a key - [How We Help](https://staging.smith-magenis.org/how-we-help/) - We are a small charity that supports families living with SMS in the UK. As well as helping families that live with the syndrome we also work with and support a variety of professionals who treat, educate, and care for people with SMS. We help and support families and professionals in a variety of ways, - [Education Support Service](https://staging.smith-magenis.org/how-we-help/education-support-service/) - Our Education Support Service is a core programme designed to improve educational outcomes for individuals with SMS. Our goal is to ensure positive educational outcomes, increased opportunities for future work or placements in adulthood, and the development of person-centered educational plans for SMS pupils. Programme Outcomes Facilitating smoother transitions through educational stages and finding suitable - [Trusts & Foundations](https://staging.smith-magenis.org/how-you-can-support-us/trusts-and-foundations/) - Trusts and Foundations serve as integral partners in our mission to cultivate a robust SMS community where everyone receives the essential support they require. These vital collaborators empower us to provide assistance to over 600 individuals living with SMS each year. If you are a charitable trust or foundation and are interested in working with - [Carer Support Service](https://staging.smith-magenis.org/how-we-help/carer-support-service/) - The Carer Support Service is an integral component of our five-year development strategy, embodying the very essence of our collective vision and aspirations. At the heart of this programme lies our commitment to fostering a stronger and more empowered community of caregivers. SMS poses unique challenges, and we understand the importance of ensuring that families - [Corporate Support](https://staging.smith-magenis.org/how-you-can-support-us/corporate-support/) - Charity of The Year Partnership Consider making The SMS Foundation your corporate charity of the year and experience the benefits of this partnership. By choosing us as your charity of the year, you can enhance your company's reputation, inspire your team, and elevate your corporate profile. We'll support you by coordinating volunteering sessions, pro bono - [Volunteering](https://staging.smith-magenis.org/how-you-can-support-us/volunteering/) - Becoming a volunteer with The SMS Foundation is not just a commitment to our cause; it's an opportunity to make a meaningful impact while enriching your own life. Our volunteers play a vital role in delivering essential support and services to our community. We recognise that many parents and carers may find themselves unable to - [How You Can Support Us](https://staging.smith-magenis.org/how-you-can-support-us/) - Whether you are running a marathon, organising a fundraising event, or want to become a regular giver we have a selection of ideas and resources to help get you going. Other Ways to Support Us Fundraising Resources Planning a fundraising event? To help support your event the SMS Foundation can provide you with a fundraising - [What is Smith-Magenis Syndrome?](https://staging.smith-magenis.org/what-is-sms/) - Overview Smith-Magenis syndrome is a genetic disability due to a microdeletion or mutation on chromosome 17. The major features of Smith-Magenis Syndrome (SMS) include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioural problems. Characteristics Individuals with Smith-Magenis Syndrome are characterised by a short flat head, prominent - [Social Media Usage and Policy ](https://staging.smith-magenis.org/social-media-usage-and-policy/) - Social media platforms offer valuable opportunities for The SMS Foundation UK to connect with its community, share information, and provide support. However, it is essential to establish clear guidelines to ensure responsible and respectful communication while maintaining the integrity of the organisation. This policy outlines the expectations for engaging with social media platforms associated with - [Media and Logo Usage Guidelines](https://staging.smith-magenis.org/media-and-logo-usage-guidelines/) - We appreciate your support and commitment to our cause, and we want to ensure that our logo is used appropriately and effectively to promote our mission. Please read and adhere to the following guidelines for using our logo in various contexts. Logo Formats and Types To maintain consistency and brand identity, we offer the following - [Terms and Conditions](https://staging.smith-magenis.org/terms-and-conditions/) - About Us This web site is owned and operated by the Smith-Magenis Syndrome Foundation UK. If you have any suggestions or comments or if you need to contact us, please email us at hazel@smith-magenis.co.uk, or by post to Smith-Magenis Syndrome Foundation UK, 61 High Street, Pewsey, Wiltshire SN9 5AF. Smith-Magenis Syndrome Foundation is a Registered - [New Diagnosis](https://staging.smith-magenis.org/what-is-sms/newly-diagnosed/) - That Defining Moment If you are viewing this website as the parent or caregiver of a child or adult newly diagnosed with SMS you may be experiencing lots of different emotions, some of which may be very difficult. Being told that your child is different and finding out that they are likely to face challenges - [Our Professional Board](https://staging.smith-magenis.org/about-us/our-professional-board/) - Details of various professionals around the UK, with a special interest in Smith-Magenis Syndrome. Dr Caroline Richards, PhD, ClinPsyD (Joint chairperson) Senior Lecturer in Neurodevelopmental DisordersDeputy Head of Education, School of Psychology, University of Birmingham Dr Caroline Richards, Senior Lecturer in Neurodevelopmental Disorders, is a Clinical Psychologist and researcher at the University of Birmingham. Her - [Other Support Organisations](https://staging.smith-magenis.org/information/external-links/) - Further reading on Smith-Magnenis syndrome and living with disability can be found on some of these websites. Other SMS Organisations PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome) PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and - [General Health Advice and Guidance](https://staging.smith-magenis.org/what-is-sms/health/) - These guidelines were developed by the Scientific and Clinical Advisory Group of the Smith-Magenis Syndrome Foundation, U.K. They are aimed at health care professionals working with individuals with Smith-Magenis Syndrome, and will be reviewed and updated at regular intervals. Over and above the routine health and vaccination schedules administered to all children, we recommend consideration - [Advice on SMS Behaviour](https://staging.smith-magenis.org/what-is-sms/sms-personalities/) - People with SMS are often described as very friendly and outgoing, and as finding social attention particularly rewarding. Many develop strong social relationships at home, school/college and in the wider community. This has benefits for the well-being and happiness of the person with SMS and can also be useful when planning programmes that aim to - [Everyday care and living with SMS](https://staging.smith-magenis.org/what-is-sms/living-with-sms/) - Smith-Magenis Syndrome is a complex disability. Each individual will exhibit different aspects of the characteristics and so each family with develop their own ‘coping’ strategies. It is important to get professionals involved early on to provide the family with the support needed. Input from paediatricians, Speech and Language therapists, Physiotherapists, educational professionals, Portage, social services, - [Videos About SMS](https://staging.smith-magenis.org/videos/) - Sharing My Syndrome ‘Sharing My Syndrome’ is a video filmed during our 2017 SMS conference. That Defining Moment Broadly focusing on the diagnosis and early planning aspects of Smith-Magenis syndrome, this film shows a number of different families that have children, adults or siblings with SMS answering the following questions: What age is the person - [Newlife’s Emergency Equipment Loan Service](https://staging.smith-magenis.org/newlifes-emergency-equipment-loan-service/) - Newlife’s Emergency Equipment Loan Service aims to address the specific needs of life-threatened/limited and terminally ill children and their families and/or protect children with disabilities from immediate and significant injuries. This free service provides fast access to equipment for a fixed period while statutory services provide longer-term support. We know that these children need effective - [Scientific Papers](https://staging.smith-magenis.org/information/documents-to-download/) - The latest information from SMS Foundation UK is stored here and continually updated as we produce additional information. Living with SMS This information was collated with SMS by experts in Smith-Magenis Syndrome or medical professionals working with an individual with SMS. It identifies the monitoring required in each medical area and the reasoning for the - [A Guide to SMS Booklet](https://staging.smith-magenis.org/information/a-guide-to-sms-booklet/) - [Frequently asked questions](https://staging.smith-magenis.org/what-is-sms/frequently-asked-questions/) - If we have one child with SMS, will our other children also have SMS? Smith-Magenis syndrome is typically not inherited. It usually results from a genetic change that occurs during the formation of reproductive cells (eggs or sperm) or in early fetal development. Most often, people with Smith-Magenis syndrome have no history of the condition - [Become an SMS Awareness Ambassador](https://staging.smith-magenis.org/how-you-can-support-us/volunteering/become-an-sms-ambassador/) - Becoming an SMS Awareness Ambassador is an opportunity to be a powerful voice for our community and beyond. Our Awareness Ambassadors play a crucial role in raising awareness and fostering a deeper understanding of SMS, acting as the voices that bridge the gap between our community and the world beyond. Presentations and awareness events can - [Donate](https://staging.smith-magenis.org/how-you-can-support-us/donate/) - Donating to the SMS Foundation UK is quick and simple! Donations can be made online or sent directly to us in the post. Donation by Bank (CAF) We use the Charities Aid Foundation. Donating is quick and simple. Gift Aid it – turn £1 into £1.25 without spending an extra penny! If you are a - [Regular Giving](https://staging.smith-magenis.org/how-you-can-support-us/regular-giving/) - SMS 1711 Circle. Your donation will help us to ensure no one living with SMS feels isolated or alone. Together, we can help to connect families, raise awareness and build futures. Become a regular donor Donating on a regular basis is beneficial for you as it allows you to budget your support. You can spread the cost over - [Become a Regional Parent Supporter](https://staging.smith-magenis.org/how-you-can-support-us/volunteering/become-a-regional-parent-supporter/) - Help Connect and Support Families in Your Region With their use of local knowledge and lived experience of Smith-Magenis syndrome, our Regional Parent Supporters (RePS) are here to provide support and guidance to all our families. Becoming a RePS with the SMS Foundation UK is a truly rewarding and impactful opportunity. As a RePS, you will - [Become a Community Supporter](https://staging.smith-magenis.org/how-you-can-support-us/volunteering/become-a-community-supporter/) - Help Support Our Activities Becoming a Community Supporter is an opportunity to make a tangible difference while gaining enriching experiences along the way. Our Community Supporters play a vital role in organising and running events, as well as managing various administrative tasks that keep our initiatives running smoothly. Whether you're helping orchestrate fundraising events or - [Become a Project Volunteer](https://staging.smith-magenis.org/how-you-can-support-us/volunteering/become-a-project-volunteer/) - Help Us to Deliver our Programmes and Projects Becoming a Project Volunteer with The SMS Foundation is not just a commitment to our cause, it's an opportunity to make a meaningful impact while enriching your own life. Our Project Volunteers play a vital role in delivering essential support and services to our community, all while - [Fundraising Ideas](https://staging.smith-magenis.org/get-involved/fundraising-ideas/) - A - auction, abseil B - book sale, bungee jump, bingo, bike ride C - car wash, car boot sale, coffee morning D - disco, dress down day, donate, diet E - ebay sale, egg hunt, 80's night F - fun run, face painting, football match G - garage sale, garden party, golf day, games - [Fundraising](https://staging.smith-magenis.org/how-you-can-support-us/fundraising/) - Make a Donation Donating to the Smith-Magenis Syndrome Foundation UK is quick and simple! Donations can be made online or sent directly to us in the post. Online We use the Charities Aid Foundation. Donating is quick and simple. Gift Aid it – turn £1 into £1.25 without spending an extra penny! If you are - [Our five-year strategy](https://staging.smith-magenis.org/our-five-year-strategy/) - Earlier this year, we conducted a comprehensive community survey to better understand the challenges faced by families living with SMS. The survey revealed alarming statistics that underscore a pressing need for support. Some of the feedback we received, included: 70% of SMS families experience regular isolation or loneliness. 83% have sought emotional support from The - [What is SMS?](https://staging.smith-magenis.org/what-is-sms/sms-through-our-logo/) - Smith-Magenis Syndrome (SMS) is a rare condition that occurs once in every 15-25,000 births. People with SMS have complex needs and behaviours, along with a learning disability that can range from mild to profound. It is a lifelong condition that will always need extra support. Overview Smith-Magenis syndrome is a genetic disability due to a - [Regional Parent Supporters](https://staging.smith-magenis.org/regional-representatives/) - With their use of local knowledge and lived experience of Smith-Magenis syndrome, our Regional Parent Supporters are here to provide support and guidance to all our families. Help with regional events that bring our community together. Our regions are distributed across the UK in-line with the breakdown of regions that the NHS use. Scotland North Scotland - [Our Vision, Mission, and Values](https://staging.smith-magenis.org/about-us/our-vision-mission-and-values/) - Our Vision: Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community. Our Mission: The Smith-Magenis Syndrome (SMS) Foundation UK shall be at the heart of our community of individuals, families, carers and professionals living and working with Smith-Magenis Syndrome and we will be the first point of contact - [SMS Conference 2022](https://staging.smith-magenis.org/conferences-events__trashed/conference-2022/) - SMS Bright Futures 2022 Conference and 30th anniversary celebrations Thank you to all the families, speakers, sponsors, and volunteers for attending our 2022 conference! #smsconf22 SMS Bright Futures 2022 Conference 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 - [Registration](https://staging.smith-magenis.org/membership-join__trashed/membership-registration/) - [swpm_registration_form] - [Profile](https://staging.smith-magenis.org/membership-login__trashed/membership-profile/) - [swpm_profile_form] - [Password Reset](https://staging.smith-magenis.org/membership-login__trashed/password-reset/) - [swpm_reset_form] - [SMS Bright Futures 2022 Conference Feedback](https://staging.smith-magenis.org/conferences-events__trashed/conference-2022/sms-2022-conference-feedback/) - Please complete our conference feedback form below. The information you provide will be helpful in planning future events and conferences. The forms are anonymous however, if you would like someone from the Foundation to respond to your feedback please include your email address in the optional email input field at the end of the form. - [Volunteer](https://staging.smith-magenis.org/volunteer/) - Get involved in the SMS Township The SMS Township is a vision for holistic support and services we believe that given time, expertise, resources, and funding many of the ideas 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 - [Application for financial support to attend 2022 conference](https://staging.smith-magenis.org/conferences-events__trashed/conference-2022/application-for-financial-support-to-attend-2022-conference/) - Applications for this event are now closed. - [Professional Membership](https://staging.smith-magenis.org/become-a-member/professional-membership/) - [Find Support for SMS](https://staging.smith-magenis.org/information/) - Here are a few of the idea’s offered in the booklet Sleep As children with SMS grow older many develop severe sleeping problems, this includes frequent waking and early rising. During the waking periods ( which can be quite lengthy) it is quite common for challenging behaviours to be exhibited. As a result of this - [Data Protection & Privacy Policy](https://staging.smith-magenis.org/privacy-policy/) - Cookies - [Spotlight](https://staging.smith-magenis.org/spotlight/) - [Community Events](https://staging.smith-magenis.org/community-events/) - [Disclaimer](https://staging.smith-magenis.org/disclaimer/) - No warranties This website is provided “as is” without any representations or warranties, express or implied. Smith-Magenis Foundation makes no representations or warranties in relation to this website or the information and materials provided on this website. Without prejudice to the generality of the foregoing paragraph, SMS Foundation does not warrant that: this website will - [Support My Smile Campaign](https://staging.smith-magenis.org/get-involved/sponsor-my-smile-campaign/) - Support My Smile Individuals with SMS are often known for their big, bright, loving, happy personalities and a smile that is simply infectious! All donations will help the SMS Foundation UK achieve our aim of supporting families living with SMS, so whether it is a ‘fiver for fangs’ a ‘tenner for no teeth’ or a - [Co-op Local Community Fund](https://staging.smith-magenis.org/get-involved/co-op-local-community-fund/) - The Smith-Magenis Syndrome (SMS) Foundation UK is delighted to have been selected as a chosen cause for the 2021 Co-op Local Community Fund. Please show your support for the SMS Foundation UK every time you shop - supporting us could not be easier! If you are a Co-op member buying selected products or services from the - [Payroll Giving](https://staging.smith-magenis.org/get-involved/payroll-giving/) - Payroll giving is one of the easiest and most efficient ways you can support the Smith-Magenis Syndrome Foundation UK. Your employer should be able to set this up for you quite easily – here is all the information you should need. Get in touch to find out more about Payroll Giving at fundraising@smith-magenis.co.uk. What is - [Sweet Dreams and Survival](https://staging.smith-magenis.org/what-is-sms/sleep-and-sms/) - Sleep Matters Impact on the family Unsurprisingly, sleep-related difficulties, specifically behaviours shown in the morning, have been found to be related to increased stress in the family. Possible causes of sleep disturbance Sleep disorder in SMS has been primarily ascribed to an inverted release pattern of a hormone called melatonin, which disrupts circadian rhythm (the - [SMS Countdown to Christmas activity advent calendar](https://staging.smith-magenis.org/sms-countdown-to-christmas-activity-advent-calendar/) - #SMSCountdowntoChristmas - [Quiz](https://staging.smith-magenis.org/quiz/) - To donate to the family SMS quiz event, please click here. ## Posts - [sp-mm](https://staging.smith-magenis.org/seedprod/sp-mm/) - Maintenance Mode This Smith-Magenis syndrome website is currently under going scheduled maintenance.Please check back soon. ## SMS Stories - [Caden's Story](https://staging.smith-magenis.org/sms_stories/cadens-story/) - Nine-year-old Caden, based in Clackmannanshire, was facing potential months of limited exercise at the start of the UK lockdown in March. We speak to his mother, Stacy, on how the wellbeing of the entire family improved thanks to the donation of a tricycle via the Smith-Magenis Syndrome Foundation. ## Fundraising Events - [Great North Run 2022](https://staging.smith-magenis.org/fundraising-events/great-north-run-2022/) - Sunday 11th September 2022 - [London Landmarks Half Marathon 2023](https://staging.smith-magenis.org/fundraising-events/london-landmarks-half-marathon-2023/) - Sunday 2nd April 2023 - [London Landmarks Half Marathon 2025](https://staging.smith-magenis.org/fundraising-events/london-landmarks-half-marathon-2025/) - We have 0 spaces available for the London Landmarks Half Marathon 2025, if you would like to run on behalf of The SMS Foundation, please contact us using the link below. Email fundraising team for LLHM place - [Great North Run 2024](https://staging.smith-magenis.org/fundraising-events/great-north-run-2024/) - Would you like to run and fundraise for the SMS Foundation UK by taking part in the famous Great North Run? The SMS Foundation UK have 0 places left in the 2024 Great North Run taking place on Sunday 8 September 2024. Join Team SMS at this iconic half marathon, taking you from the centre of - [London Landmarks Half-Marathon 2022](https://staging.smith-magenis.org/fundraising-events/london-landmarks-marathon-2022/) - Sunday 3rd April 2022 (Past event - now closed) - [SMS Stay Awake 2021](https://staging.smith-magenis.org/fundraising-events/sms-stay-awake-2021/) - Sat 19th June 2021 (Now finished) - [Fulfilling Futures Fundraising Appeal](https://staging.smith-magenis.org/fundraising-events/fulfilling-futures/) - Ongoing ## Information posts - [Cataracts](https://staging.smith-magenis.org/spotlight/cataracts/) - What are cataracts? Cataracts are a visual impairment caused by the lens in your eye developing cloudy patches which result in blurry vision. The lens in our eyes in a healthy condition are clear and transparent however over time with cataracts these patches become progressively worse creating more blurred/Misty vision over time potentially leading to - [Managing SMS Sleep](https://staging.smith-magenis.org/spotlight/spotlight-on-sleep/) - Autism & Sleep Panels (recording) Key times in this video: 1:00 mins - 1:40 mins Newlife’s Emergency Equipment Loan Service Newlife’s Emergency Equipment Loan Service aims to address the specific needs of life-threatened/limited and terminally ill children and their families and/or protect children with disabilities from immediate and significant injuries. This free service provides fast - [Detached Retina](https://staging.smith-magenis.org/spotlight/detached-retina/) - What is a detached retina? Retinal detachment is a term used to describe when the thin layer of tissue (the retina) pulls away from the back of the eye. As seen in the photo below, seeing tiny specks that float through your field of vision (floaters), blurred vision, and flashes of light in one or - [Myopia](https://staging.smith-magenis.org/spotlight/myopia/) - What is a myopia? Despite the complicated-sounding name myopia can simply be referred to as near or short-sightedness. In essence, this means that the person affected by myopia will be able to see objects that are near to them more clearly however when the object is further away it will appear blurry. See the photo - [Cortical Visual Impairment](https://staging.smith-magenis.org/spotlight/cortical-visual-impairment/) - What is Cortical Visual Impairment (CVI)? Cortical visual impairment (CVI) is a brain-based visual impairment. The processing of visual information is impaired as a result of a neurological problem in the areas of the brain responsible for visual function. As many areas of the brain are responsible for visual function, some areas process movement, colours - [Strabismus](https://staging.smith-magenis.org/spotlight/strabismus/) - What is strabismus? Strabismus - or more commonly known as squint, is an eye condition where the eyes do not look in the same direction as each other and do not work together as a pair all of the time. Strabismus can be caused by a refractive error - where the eye cannot clearly focus - [Nystagmus](https://staging.smith-magenis.org/spotlight/nystagmus/) - What is Nystagmus? Nystagmus describes rapid and uncontrolled eye movement, if you have nystagmus your eyes will move or ‘wobble’ constantly. This uncontrolled movement can be in an up and down, circular, or side to side motion - or a combination of all. Many people with nystagmus have reduced vision due to this wobbling. Why - [Introduction to vision in SMS](https://staging.smith-magenis.org/spotlight/introduction-to-vision-in-sms/) - Through the Keele University Internship Programme, Liam joined the SMS Foundation for the summer to complete a project around visual impairment. Liam himself went from being able to read and write in perfect 20/20 vision, completing his GCSE examinations in 2017, to having someone else read his results a mere few months later, on results ## Story Posts - [Harry's Story](https://staging.smith-magenis.org/stories/harrys-story/) - When Harry outgrew his cot and moved into a bed, the family’s problems with sleep really began. This is the story of the Donohue family as they sought to keep their four-year-old son, Harry, and the whole family safe at night by using a Safety Sleeper. We found that when Harry awoke in the early ## Categories - [News](https://staging.smith-magenis.org/category/news/) - [Research](https://staging.smith-magenis.org/category/research/) - [Activities](https://staging.smith-magenis.org/category/activities/) - [Conferences](https://staging.smith-magenis.org/category/conference/) - [Blog](https://staging.smith-magenis.org/category/blog/) - [SMS Stories](https://staging.smith-magenis.org/category/sms-stories/) - [Physical & Medical](https://staging.smith-magenis.org/category/physical-medical/) ## Tags - [Test](https://staging.smith-magenis.org/tag/test/) ## SMS Stories - [Sleep Stories](https://staging.smith-magenis.org/sms_story/sleep-story/) - [Physical Wellbeing](https://staging.smith-magenis.org/sms_story/physical-wellbeing/) ## Types of Community Event - [Regional Events](https://staging.smith-magenis.org/type_of_community_event/regional-events/) ## Types of Spotlight - [Vision](https://staging.smith-magenis.org/spotlight-on-sms/vision/) - [Sleep](https://staging.smith-magenis.org/spotlight-on-sms/sleep/)