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Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

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News

Latest News from the SMS Foundation

Proud finalist of Keele University Breaking the Mould awards

We’ve been shortlisted for an Award!

September 27, 2022 by Leeann Stevenson

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 …

Read moreWe’ve been shortlisted for an Award!

Transitions Community Chat (online)

September 12, 2022 by Leeann Stevenson

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. …

Read moreTransitions Community Chat (online)
residential options research project

Research into Residential Options for Adults with SMS

June 10, 2022 by Leeann Stevenson

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 …

Read moreResearch into Residential Options for Adults with SMS
Ann Smith announcing Alex Jowitt award

Alex Jowitt Award 2022

May 25, 2022 by Leeann Stevenson

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 …

Read moreAlex Jowitt Award 2022
Smith-Magenis Syndrome Foundation UK logo

Introducing six new intern placements for 2022

May 18, 2022 by Leeann Stevenson

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  …

Read moreIntroducing six new intern placements for 2022

A brief summary of The SMS Bright Futures 2022 Conference

May 13, 2022 by Leeann Stevenson

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 …

Read moreA brief summary of The SMS Bright Futures 2022 Conference
Alex Jowitt Award

The Alex Jowitt Award, nominations are now open!

April 9, 2022 by Leeann Stevenson

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 …

Read moreThe Alex Jowitt Award, nominations are now open!

Are you considering adopting a child with Smith-Magenis syndrome?

March 9, 2022 by Leeann Stevenson

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 …

Read moreAre you considering adopting a child with Smith-Magenis syndrome?
OJRD logo

Caregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases

February 11, 2022 by Leeann Stevenson

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 …

Read moreCaregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases
genetic disorders charity logos

Charities write a letter to Dr. Liam Fox over concerns about Down Syndrome Bill

January 10, 2022 by Leeann Stevenson

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 …

Read moreCharities write a letter to Dr. Liam Fox over concerns about Down Syndrome Bill
The SMS Foundation AGM 2019

Notification of Annual General Meeting

January 5, 2022 by Leeann Stevenson

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 …

Read moreNotification of Annual General Meeting
community drop in zoom chat

Celebrating International SMS Awareness Day

November 10, 2021 by Leeann Stevenson

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 …

Read moreCelebrating International SMS Awareness Day

Newsletter Summer 2021

July 23, 2021 by Leeann Stevenson

This is a special edition newsletter reporting on the success of the online Teddy Bears’ Picnic, earlier this year.

Read moreNewsletter Summer 2021
Stay Awake Challenge - woman awake in bed

The SMS Stay Awake Challenge is back!

June 4, 2021 by Leeann Stevenson

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 …

Read moreThe SMS Stay Awake Challenge is back!
Fulfilling Futures logo

Fulfilling Futures – We need your help

May 20, 2021 by Leeann Stevenson

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 …

Read moreFulfilling Futures – We need your help
Teddy Survey

Teddy Bears’ Picnic Feedback – Survey closes on 16th May

May 17, 2021 by Leeann Stevenson

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 …

Read moreTeddy Bears’ Picnic Feedback – Survey closes on 16th May
Teddy bears picnic image

Teddy Bears’ Picnic – schedule for the weekend

April 21, 2021 by Leeann Stevenson

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 …

Read moreTeddy Bears’ Picnic – schedule for the weekend
Genny Bear packing boxes

300 picnic boxes make their way to UK SMS members

April 19, 2021 by Leeann Stevenson

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 …

Read more300 picnic boxes make their way to UK SMS members

Easter Card and Invitations sent to UK SMS Members

April 14, 2021 by Leeann Stevenson

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. …

Read moreEaster Card and Invitations sent to UK SMS Members

Impact of COVID-19 on SMS Population Survey

February 10, 2021 by Leeann Stevenson

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 …

Read moreImpact of COVID-19 on SMS Population Survey

This week’s community Zoom drop-in chat with Jayne Dainty of SOS Care Services

January 11, 2021 by Leeann Stevenson

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 …

Read moreThis week’s community Zoom drop-in chat with Jayne Dainty of SOS Care Services
SMS conference

SMS Foundation UK Conference Cancelled for 2021

January 8, 2021 by Leeann Stevenson

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. …

Read moreSMS Foundation UK Conference Cancelled for 2021
snapshot of December newsletter

December Newsletter

January 5, 2021 by Leeann Stevenson

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

Read moreDecember Newsletter
NUE nomination

Natasha Craven Shortlisted for ‘Best Student Contribution’ to a Small to Medium-sized Employer award!

January 5, 2021 by Leeann Stevenson

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 …

Read moreNatasha Craven Shortlisted for ‘Best Student Contribution’ to a Small to Medium-sized Employer award!
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Proud finalist of Keele University Breaking the Mould awards
SCA Terrific trustee award 2020
NUE Best Student contribution

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