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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

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  • What is SMS?
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News

Murrays

Win a loan of a Safety Sleeper for 2 weeks

November 15, 2020 by Leeann Stevenson

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 …

Read moreWin a loan of a Safety Sleeper for 2 weeks
Natasha Craven

The SMS Foundation introduces Natasha Craven as our Research and Admin Assistant

November 9, 2020 by Leeann Stevenson

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 …

Read moreThe SMS Foundation introduces Natasha Craven as our Research and Admin Assistant
Nigel Over winner of 'Terrific Trustee' at SCVO Charity Awards 2020

Nigel Over wins the ‘Terrific Trustee’ category at SCVO Charity Awards 2020

September 25, 2020 by Leeann Stevenson

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 …

Read moreNigel Over wins the ‘Terrific Trustee’ category at SCVO Charity Awards 2020
SMS distance aware shield

Be Distance Aware Shield

August 27, 2020 by Leeann Stevenson

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 …

Read moreBe Distance Aware Shield

Yorkshire Three Peaks raises over £10k

August 20, 2020 by Leeann Stevenson

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 …

Read moreYorkshire Three Peaks raises over £10k
SMS Regional representatives map image

Connecting Families – Regional Representatives

August 20, 2020 by Leeann Stevenson

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 …

Read moreConnecting Families – Regional Representatives
Nigel Over working for the SMS Foundation

Nigel Over ‘Terrific Trustee’ finalist in SCVO Awards

August 19, 2020 by Leeann Stevenson

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 …

Read moreNigel Over ‘Terrific Trustee’ finalist in SCVO Awards
Grace Sutton

Yorkshire Three Peaks Challenge

July 29, 2020 by Leeann Stevenson

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 …

Read moreYorkshire Three Peaks Challenge
Keele University and SMS Foundation logos

SMS Demographic Profile Study is launched

June 12, 2020 by Leeann Stevenson

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 …

Read moreSMS Demographic Profile Study is launched
Picnic YouTube screenshot

Sunset, Moonlight and Sunrise – Teddy Bear’s Picnic

June 3, 2020 by Leeann Stevenson

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 …

Read moreSunset, Moonlight and Sunrise – Teddy Bear’s Picnic
newsletter snippet early summer 2020

Early summer newsletter

May 29, 2020 by Leeann Stevenson

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 …

Read moreEarly summer newsletter
The 2.6 Challenge

The 2.6 Challenge

May 13, 2020 by Leeann Stevenson

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 …

Read moreThe 2.6 Challenge
Design Genny Bear Competition

Competition – Design Genny Bear

May 3, 2020 by Leeann Stevenson

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 …

Read moreCompetition – Design Genny Bear
Songs Make Smiles concert banner

Songs Make Smiles Concert

April 29, 2020 by Leeann Stevenson

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! …

Read moreSongs Make Smiles Concert
SMS Bear Hug and Be Hugged badge

Launch of #SMSBearHugandBeHugged Campaign

April 26, 2020 by Leeann Stevenson

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 …

Read moreLaunch of #SMSBearHugandBeHugged Campaign
Spring Newsletter featured image

Our Spring 2020 Newsletter

April 4, 2020 by Leeann Stevenson

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 …

Read moreOur Spring 2020 Newsletter
Example of emergency alert card

Emergency hospital documents for download

March 24, 2020 by Leeann Stevenson

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. …

Read moreEmergency hospital documents for download
Helen Hargrave - Fundraising Manager

The Smith-Magenis Syndrome (SMS) Foundation UK introduces Helen Hargrave as our Fundraising Manager

March 14, 2020 by Leeann Stevenson

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 …

Read moreThe Smith-Magenis Syndrome (SMS) Foundation UK introduces Helen Hargrave as our Fundraising Manager
Information and Communications Manager Leeann Stevenson

Information and Communications Manager Announced for Smith-Magenis Syndrome (SMS) Foundation UK

February 1, 2020 by Leeann Stevenson

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 …

Read moreInformation and Communications Manager Announced for Smith-Magenis Syndrome (SMS) Foundation UK
Nigel Over, CEO Smith-Magenis Syndrome Foundation UK

CEO Announced for The Smith-Magenis Syndrome (SMS) Foundation UK

January 12, 2020 by Leeann Stevenson

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 …

Read moreCEO Announced for The Smith-Magenis Syndrome (SMS) Foundation UK
Registered CIO Charity Certificate

Charity Commission approval for CIO

December 5, 2019 by Leeann Stevenson

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 …

Read moreCharity Commission approval for CIO
Songs Make Smiles concert banner

Ciara Harvie becomes Charity Ambassador For SMS Foundation

November 17, 2019 by Leeann Stevenson

Sensational Mezzo-Soprano Ciara Harvie becomes charity ambassador for the Smith-Magenis Syndrome (SMS) Foundation UK. June 2016, a Summer Soiree at Donaldson’s in Linlithgow. A celebration of the achievements and future prospects for those moving on. A community coming together. A young man sitting at the top table bursting into tears upon hearing the first few …

Read moreCiara Harvie becomes Charity Ambassador For SMS Foundation
New SMS Logo

Smith-Magenis Syndrome Foundation UK – EGM Notice

October 3, 2019 by Leeann Stevenson

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 …

Read moreSmith-Magenis Syndrome Foundation UK – EGM Notice
changing charity structure image

Our 2020 Vision

September 19, 2019 by Leeann Stevenson

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 …

Read moreOur 2020 Vision
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Connecting Families, Raising Awareness, Building Futures

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SCA Terrific trustee award 2020
NUE Best Student contribution

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