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 …
News
Latest News from the SMS Foundation
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 …
Recognising Nigel Over’s 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 …
We’ve 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 …
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 …
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 …
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 …
Caregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases
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 …
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 …
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 …
Celebrating International SMS Awareness Day
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 …
Newsletter Summer 2021
This is a special edition newsletter reporting on the success of the online Teddy Bears’ Picnic, earlier this year.
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, …
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 …
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 …
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 …
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 …
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 …
This week’s 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 …
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 …
Natasha Craven Shortlisted for ‘Best Student Contribution’ to a Small to Medium-sized Employer 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’ …
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 …
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 …
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 …