Smith-Magenis Syndrome Foundation UK
Connecting Families, Raising Awareness, Building Futures
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 …
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. …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
