The Schinzel-Giedion Syndrome Foundation
- Country
- England & Wales
- Charity number
- 1186327
- Status
- Registered
- Registered
- Nov. 13, 2019
- Legal form
- CIO
Address
- Address
- Lowfield Hall
Poles Lane
Lowfield Heath
Crawley
RH11 0PX
Contact
- Phone
- +447957168815
- contact@sgsfoundation.org
- Website
sgsfoundation.org
Activities
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.
Classification
- How
- Makes Grants To Individuals, Makes Grants To Organisations, Provides Advocacy/advice/information
- What
- The Advancement Of Health Or Saving Of Lives
- Who
- Children/young People, People With Disabilities
Geography
- Country
- Canada, Denmark, United States
- Region
- Throughout England And Wales
Finances
| Period end | Income | Expenditure |
|---|---|---|
| March 31, 2025 | £68,345 | £64,185 |
| March 31, 2024 | £85,501 | £64,835 |
| March 31, 2023 | £59,298 | £4,961 |
| March 31, 2022 | £20,427 | £8,359 |
| March 31, 2021 | £29,260 | £1,793 |
Trustees
| Name | Appointed |
|---|---|
| Dr Nuala Summerfield (Chair) | Nov. 13, 2019 |
| Aleksandra Blagunovski | March 24, 2024 |
| Dana Bradley | April 24, 2022 |