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 …
News
Smith-Magenis Syndrome Foundation UK – EGM Notice
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 …
Our 2020 Vision
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 …
Melatonin Application Rejected by SMC
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 …
Team of SMS Dads Complete 3 Peaks Challenge
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. …
Our Vision, Mission and Aims
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 …