Our Vision:
Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community.
Our Mission:
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 for those seeking information and support.
Our Strategic aims:
Connecting families:
• Bringing the Smith-Magenis Syndrome community together.
Supporting those who have or are affected by Smith-Magenis Syndrome:
• To preserve and protect the health and promote the relief of individuals affected by SMS and their families.
• To support families and individuals with SMS.
Raising Awareness:
• To advance the education and knowledge of both medical professionals and the general public about SMS and its implications for the family.
• To educate and increase the knowledge and understanding of SMS.
Building Futures:
• To promote and support research into the management and effect of SMS.
• To support and promote a sustainable, inclusive community.
Sustainability:
• To future-proof the charity through good governance, management and accountability
Our Projects:
Connections:
• Membership Management (Membership and customer resource management solutions)
• Social meetings
• Conferences
• Internet presence
• Collaborative Networks (Network building)
Support:
• Emotional support
• Practical support
• Provide guidance
• Grants schemes
Promote Awareness/ Educate:
• Access to information (Information update; accessible formats; target distribution; website; Published support information; international literature sharing)
• Professional symposiums (Training days; regional symposiums)
• Merchandise
• Media Strategy (Public Relations Strategy; awareness campaigns; Jeans for Genes; Support My Smile; Charity Awards)
Future:
• Patient Demographics (diagnosis profile request from genetic clinics)
• Patient Registry
• Registry of healthcare professionals with expertise / knowledge of SMS
• Research Projects (Sleep security; gastro-reflux; melatonin and daytime behaviour; neurological investigation)
Sustainability:
• Development Strategy (Future planning; Trustee training and development)
• Fundraising Strategy (Financial Management; Charity Fundraising Portals Optimisation)
Address
12 Bankton Brae
Murieston
Livingston
West Lothian
EH54 9LA
United Kingdom
Phone: 01506429970
Website: http://www.smith-magenis.co.uk
Email: nigel@smith-magenis.co.uk
Contact form: https://smith-magenis.org/contact-us/
