THE SCHINZEL-GIEDION SYNDROME FOUNDATION

Registered charity 1186327 · accounts filings on the Charity Commission register

Proving support to families caring for a child with SGS, raising awareness of SGS and facilitating and supporting medical research that will help to improve the quality and length of life of children living with SGS.

Objects

THE OBJECTS OF THE CIO ARE: TO PRESERVE AND PROTECT THE GOOD HEALTH OF CHILDREN WITH SCHINZEL-GIEDION SYNDROME FOR THE PUBLIC BENEFIT BY:-· RAISING AWARENESS OF SCHINZEL-GIEDION SYNDROME THROUGH THE CREATION OF INFORMATION RESOURCES DESIGNED FOR THE SCIENTIFIC AND MEDICAL COMMUNITIES AND ALSO FOR FAMILIES, AVAILABLE INTERNATIONALLY;· ENCOURAGING AND FACILITATING RESEARCH INTO THE UNDERLYING CAUSES AND POTENTIAL THERAPIES FOR SCHINZEL-GIEDION SYNDROME, THROUGH CREATION OF AN INTERNATIONAL PATIENT REGISTRY AND THROUGH DEVELOPMENT OF LINKS WITH RELEVANT INTERNATIONAL RESEARCH ORGANISATIONS;·IMPROVING ACCESS TO PUBLISHED SCIENTIFIC INFORMATION ABOUT SCHINZEL-GIEDION SYNDROME AND THE HEALTH ISSUES AFFECTING CHILDREN WITH SCHINZEL-GIEDION SYNDROME, CURATED IN AN UNDERSTANDABLE WAY AND AVAILABLE ON THE SCHINZEL-GIEDION SYNDROME FOUNDATION’S WEBSITE, FOR FAMILIES INTERNATIONALLY; AND·TO SUPPORT RESEARCH INITIATIVES AND TO SUPPORT CHILDREN WITH SCHINZEL-GIEDION SYNDROME AND THEIR FAMILIES, INTERNATIONALLY. NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005 AND SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008.

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

Causes: The Advancement Of Health Or Saving Of Lives · website · Get email alerts

Financial health, per its FY2025 accounts

The accounts state that the charity reported a surplus of £4,160 for the year ended 31 March 2025, with total income of £68,345 and total expenditure of £64,185. Total reserves increased to £118,652 at year-end, which the trustees consider to provide a strong and sustainable financial position. The charity operates on a volunteer basis with no trustee remuneration.

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.

• Financial reserves policy and procedures
• Internal charity financial controls policy and procedures
• Internal risk management policy and procedures
• Safeguarding policy and procedures
• Serious incident reporting policy and procedures
• Social media policy and procedures
• Trustee conflicts of interest policy and procedures
• Trustee expenses policy and procedures

Public fundraising profile: JustGiving — The Schinzel-Giedion Syndrome Foundation (matched by registered charity number).

Funders the charity credits

Named as funders/supporters on the charity’s own website (the charity’s claim, distinct from accounts-verified grants).

• The Orphan Disease Center — “The Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2024 Million Dollar Bike Ride Pilot Grant Progr…” (source page)

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

Trustees · trustee networks

• Dr Nuala Summerfieldchair
• Aleksandra Blagunovski
• Dana Bradley

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

Operates in: Canada · Denmark · Throughout England And Wales · United States

Income and spending

Common questions