THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO

Registered charity 1186647 · accounts filings on the Charity Commission register · also known as THE SMITH-MAGENIS SYNDROME (S.M.S.) FOUNDATION UK · also registered in Scotland as SC050921 (OSCR)

We are a small charity that supports families living with Smith-Magenis syndrome (SMS), a rare condition that occurs once in every 15-25,000 births. People with SMS have complex needs and behaviours, along with a learning disability. Our aim is to provide all caregivers and professionals with the knowledge and understanding to feel empowered and confident to support a person with SMS.

Objects

THE OBJECTS OF THE CIO ARE:A) TO PRESERVE AND PROTECT THE HEALTH AND PROMOTE THE RELIEF OF PERSONS AFFECTED BY SMITH-MAGENIS SYNDROME AND ANY ASSOCIATED CONDITION,B) TO ADVANCE THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC ON THE SUBJECT OF SMITH-MAGENIS SYNDROME AND ITS IMPLICATIONS FOR THE FAMILY,C) TO ADVANCE PUBLIC EDUCATION BY PROMOTING RESEARCH INTO THE MANAGEMENT OF SMITH-MAGENIS SYNDROME AND TO PUBLISH USEFUL RESULTS THEREOF AND TO SUPPORT ORGANISATIONS PROMOTING RESEARCH INTO SMITH-MAGENIS SYNDROME.

The charity’s charitable objects and area of benefit, quoted from its governing document as held on the Charity Commission register.

Causes: General Charitable Purposes · The Advancement Of Health Or Saving Of Lives · Disability · website · Get email alerts

Financial health, per its FY2025 accounts

The accounts state that the charity operated at a deficit of £2,536 for the 18-month period, with unrestricted reserves falling to £6,615 at year-end. The trustees note that including pending GoFundMe receipts, unrestricted reserves were £12,295, equivalent to approximately five months of average core expenditure, which exceeds their stated policy target of three months.

Automated summary of the FY2025 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Accounts independently examined (not a full audit). Discloses 5 of 6 completeness components.

Policies the charity declares

In its annual return the charity told the Commission that it has the policies listed below. This is self-declared: it is not verified by the Commission or by this site, and it is not evidence of how a policy works in practice.

• Bullying and harassment policy and procedures
• Complaints handling
• Complaints policy and procedures
• Conflicting interests
• Financial reserves policy and procedures
• Internal charity financial controls policy and procedures
• Internal risk management policy and procedures
• Investing charity funds policy and procedures
• Investment
• Paying staff
• Risk management
• Safeguarding policy and procedures
• Safeguarding vulnerable beneficiaries
• Serious incident reporting policy and procedures
• Social media policy and procedures
• Trustee conflicts of interest policy and procedures
• Trustee expenses policy and procedures
• Volunteer management

Public fundraising profile: JustGiving — The Smith-Magenis Syndrome (SMS) Foundation UK CIO (matched by registered charity number).

Public profiles (found on the charity’s own website): facebook

Register events

• Received assets from another charity (30/12/2021) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Trustees · trustee networks

• Hazel Wotherspoonchair
• Alistair Hudson
• Alvar de Wolff
• Andrew Bird
• Emma Riddell
• Jacqueline Jenkins
• Jayne Marie Dainty
• Laurie Grainger
• Michael Pearson
• William Stevenson

Trustee list from the Charity Commission register (current, not historical).

Operates in: Northern Ireland · Scotland · Throughout England And Wales

Income and spending

Common questions

Government & lottery funding

Grants to this charity published as open data by government and lottery funders (360Giving).