News

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 …

On 23rd August, a group of 19 Dads that have children with Smith-Magenis syndrome completed the epic ‘3 Peaks Challenge’ to raise money and awareness for SMS. The event involved trekking up the highest mountain in Scotland, England and Wales and is considered one of the ultimate tests of physical endurance, mental stamina and teamwork. …

The General Data Protection Regulations, which are a government law, are changing on 25th May 2018 and we have got to make sure that any information that we have about you is held correctly so that we can continue being in contact with you. We don’t pass any of your details onto anybody else and …

It’s World Smith-Magenis Syndrome Awareness Day, and the SMS Foundation UK are also celebrating our 25th anniversary – DOUBLE CELEBRATION! Across the UK the SMS Foundation have been encouraging and helping to fund parties so that families can connect, share stories and celebrate life living with SMS. A number of events have been organised by …

Joanne Martland and her son Louie are currently featuring in local newspaper, Wigan Today, to help raise awareness for Jeans for Genes day and Smith-Magenis syndrome. Jeans for Genes day is on Friday 22nd September and the Smith-Magenis Syndrome Foundation have partnered with the charity to help increase awareness. In the article Joanne describes her …

A Wiltshire family with a child with a rare genetic disorder have been chosen as the face for the online campaign #dreamforgenes. The campaign is to encourage schools to sign up for Jeans for Genes Day – when children and adults wear jeans for the day in exchange for a small donation to the charity. …

A BOGNOR REGIS family of a little boy with a rare genetic disorder has been chosen to front a national charity campaign. Riley Pearson, six, has Smith Magenis Syndrome, to mean he has severe behavourial problems. Along with his dad, Mick, he has become the face of the fundraising bid by Jeans for Genes. The …

Let me explain Smith-Magenis Syndrome (SMS) through our logo; the Sun, Moon and Stars. The sun and moon represents the body clock. In Smith-Magenis Syndrome the body clock, the circadian rhythm, is flipped. Our children naturally want to be awake at night and asleep during the day. We recognise that our children don’t have a …

A huge congratulations to our very own trustees Nigel Over and Hazel Wotherspoon, part of a committee of 8 people, and winners of the award Cracking Campaign of the Year, this week at the Scottish Charity Awards run by the SVCO. The ‘#IncludED in the Main’ campaign was set up by the charity Enable Scotland. …

A big thank you to Capital Document Solutions in Edinburgh for printing of copies of the SMS Booklet ready for this weekend’s conference. A special mention to Joyce Campbell who did all the hard work at Capital Document Solutions to make this happen and Mark Harvie for arranging for this to be done.