Connecting Families | Raising Awareness | Building Futures

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 (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.

Nobody living with SMS should ever feel isolated or alone. Through our conferences and events, online presence and social media platforms we will connect families, raise awareness and build futures.

Together we shall gain and share knowledge through research and experience, seeking all opportunities to educate and promote understanding of the syndrome. We value every person affected by Smith-Magenis Syndrome and shall empower them to reach their full potential as respected members of society.

Our Values

Compassion:
Caring, supportive, advocacy, empathy, sympathy
Ambition:
Empowering, visionary, future, encouragement
Integrity:
Conscientious, honest, ethical, responsible, trust, confidentiality
Knowledge:
Factual, researched, considered, informative, objective
Respect:
Understanding, non-judgemental, transparent
Equality:
Inclusive, fair
Sustainable:
Continuity, future, accountability, governance, well managed
Community:
Teamwork, togetherness, friendship

SMS Foundation Strategic Review

Strategic Aims

Connecting families:

  • Bringing the Smith-Magenis Syndrome community together.

Supporting those who have or are affected by SMS:

  • 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

Community Stakeholders

Statutory:

  • Charity Commission, OSCR, Information Commissioner, HMRC, The Fundraising Regulator

Organisation:

  • Trustees, Volunteers, Staff (future)

Members

Professionals:

  • Professional Advisory Board
  • Medical / health professionals, Social work / care professionals, Educational professionals, Employment specialists
  • Pro Bono / Advisors

Funders:

  • Individual fundraisers, Grant Providers, Corporate Social Responsibility supporters

Partners:

  • Smith-Magenis Syndrome International Community
  • Genetic Disorders Support Network
  • Learning Disability Networks
  • Research Networks (Cerebra)

Projects

Connections:

  • Membership and stakeholder management systems
  • Social meetings
  • Conferences
  • Internet presence
  • Collaborative networks (Network building)

Support:

  • Emotional support
  • Practical support
  • Guidance
  • Individual grants scheme

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

Improving The 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

Activity/Project Costs

Current Activities
Charity Administration £2,000
Legal Fees £500
Social Events £3,000
Conference 2019 £45,000 (£25,000 income)
Promotional Merchandise £8,600
Grant Scheme £4,000
Research – Sleep Study £15,590
Literature Updates £5,000
Total £86,690 £61,690 net
Our reserves on 30th June 2017 were: £64,658

 

Strategic Projects
Membership/Fundraising Database £8,240
Development Strategy Consultancy £15,180
Research – Daytime Melatonin £15,000
Research – Neurological Investigation £78,000 – £250,000
Research – Gastro-Reflux £???
Patient Registry £???
Education and Information Videos £1,600
Staffed Charity £???

To Meet Our Objectives Requires A Huge Increase In Income