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 for those seeking information and support.

To best fulfil our aims and ambitions we need to change the governance structure of the charity. The trustees are proposing that we convert from an unincorporated association (Registered UK Charity) to a Charitable Incorporated Organisation (CIO).

As an unincorporated association, the trustees are personally liable for what the charity does. We are unable to enter into contracts or control some investments in the name of the charity. Any property has to be held on the charity’s behalf by two or more trustees or a corporate custodian trustee or the charities’ land holding service. Being a Registered Charity restricts us on what we can do.

The CIO structure, in effect, allows charities to enter into contracts as corporate entities with limited liability for the trustees and members. Charities that take up CIO status do not need to register with Companies House or be subject to company law, but are registered with and regulated by the Charity Commission. As a corporate (CIO) entity, the charity would have the legal capacity to do many things in its own name such as: employing paid staff, delivering charitable services under contractual agreements, entering into commercial contracts, owning property, etc. A CIO has greater options for raising funds through trusts and grants than an unincorporated association. A CIO is more attractive for support through Pro Bono networks.

It is our ambition to be able to move to a staffed organisation from early 2020 to be in a better position to support our members and to deliver on our aims and objectives.

This change of governance requires approval by our members. A Special or Extraordinary General Meeting (EGM) is required. Our provisional date for the EGM is the weekend of 16/17 November 2019. Proxy and postal voting options will be available. Full details will be made available approximately 21 days before the EGM.

In preparation for the vote on these matters, the register of members eligible to vote will be frozen as of 30 September 2019. Members eligible to vote are those who have joined or renewed under the requirements of GDPR effective from 25th May 2018. Any persons wishing to join the charity after the 30 September 2019 will be entered as Associate Non-Voting Members.