Smith-Magenis Syndrome Foundation UK
Connecting Families, Raising Awareness, Building Futures
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 …
The Scottish Medicines Consortium (SMC) has rejected the application to recommend prolonged-release melatonin (Slenyto®) as a treatment for insomnia in children with autism spectrum disorder and/or Smith-Magenis syndrome (SMS). The decision was based on uncertainty that this medicine would offer value for money to NHS Scotland. The wider implication is that the SMC are saying …
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 SMS Foundation have been busy planning for a sustainable future with a development strategy looking at our vision, aims and goals for the next 1, 3, 5 and 10 years ahead. Our Vision Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community. Mission Statement The Smith-Magenis Syndrome …
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 …
Saturday 5th May 2018 Conkers – Award winning attraction at the heart of the National Forest We are delighted to announce that we will be holding our AGM at Conkers in Derbyshire on Saturday 5th May. Entry to the attraction Conkers is from 10am – 4pm and will be free of charge to adult members …
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 …
We would like to say a huge “Thank You” to all those that helped to support last weeks Jeans for Genes Day and the Smith-Magenis Syndrome Foundation. The day was a huge success as schools and workplaces pulled on their jeans to raise awareness and funds for people with genetic disorders. Some of the schools …
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 …
