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SMS Foundation UK
Supporting SMS families for a positive future
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 …
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 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 …
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. …
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 Programme Staff Matters UK Demographics Study Conference 2021 Our Fundraising During Coronavirus How We Continue To Care Genny Bear
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 calls Design ‘Genny Bear’ competition Information and Support Service update Fundraising during Coronavirus Mia’s story How our funds can help …
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 …
Genny Bear is still missing, but we don’t know what she looks like. Genny Bear is named after the ‘geni’ in Magenis. What we do know is that she is very special to Smith-Magenis syndrome and her appearance and outfit will be significant too. We need your help! Can you help us by drawing what …
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! …
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 …
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 …
