Smith-Magenis Syndrome Foundation UK
Connecting Families, Raising Awareness, Building Futures
Latest News from the SMS Foundation
The SMS Foundation UK has united with a group of eight charities, writing a letter to Dr. Liam Fox and requesting a meeting in response to the proposed Down Syndrome Bill. The charities are also pressing that the scope of the proposed Bill be broadened to include all people with rare chromosome and genetic disorders …
Notification of Annual General Meeting of the Smith-Magenis Syndrome (SMS) Foundation UK CIO (1186647 &SC050921) The Trustees, as the voting members of the charity, shall meet via Zoom on Tuesday 25 January 2022 at 7pm for the charity’s AGM. Interested individuals, general members of the SMS Foundation, supporters, etc., are welcome to attend and contribute …
Please see below a selection of events and activities taking place over the next week in celebration of the International Smith-Magenis Syndrome Awareness Day on Wednesday 17th November!! We would also like to take this opportunity to thank everyone who has supported The SMS Foundation UK over the past year, please see our video message …
This is a special edition newsletter reporting on the success of the online Teddy Bears’ Picnic, earlier this year.
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 …
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 …
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 …
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 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 survey is being conducted by the Smith-Magenis Syndrome (SMS) Foundation UK with the purpose of improving our understanding of COVID-19 in people with Smith-Magenis Syndrome across the world. After collating the results and appropriate consultation with our scientific and clinical advisers, we intend to publish a summary of our findings. This is a piece …
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 …
