[UK] Krabbe Krabbe UK Trustees’ Annual Report For the year ended 31 March 2025
Objectives and Activities
Charitable Purposes
To relieve sickness and preserve and protect the health of children and adults suffering from Krabbe Disease in the United Kingdom and Europe, in particular but not exclusively by supporting and funding research and promoting the extension of newborn screening for Krabbe Disease.
To preserve and protect the health of the families caring for children and adults suffering from Krabbe Disease in the United Kingdom and Europe by such means as the trustees may determine
To support bereaved families who have lost family members to Krabbe Disease in the United Kingdom and Europe by such means as the charity trustees may determine
Main Activities
We continued to support a number of families who had received a diagnosis of Krabbe Disease and supported others who have children who have Krabbe Disease.
We supported families who lost children to Krabbe Disease during the year and continued to support other families.
We continued to raise awareness of the disease with clinicians and research organisations, throughout 2024 and 2025 around the world through video conferences and phone calls.
We provided letters of support to UK based Krabbe disease research projects building on previously successful grant funding at a UK based research institution.
We continued to be active participants in The European Reference Network for Inherited Metabolic Disorders (MetabERN) and one of our trustees was a member of the Patient Organisation Steering Committee.
Public Benefit Statement
The Trustees confirm that they have complied with their duty to have due regard to the Charity Commission’s guidance on public benefit in exercising their powers and in planning activities for this and future years.
Achievements and Performance
Fundraising has continued at similar levels to previous years, and a reserve for future research funding has been set identified.
1
Gene Therapy Research continued in the US in 2024 with Krabbe UK trustees providing advocacy support and information although one of the programmes was halted in 2024. Further programmes are planned.
Social Media platforms provided by Krabbe UK continue to be used by families and friends of Krabbe patients to keep in touch, find support and learn more about the disease.
Financial Review
New avenues for raising funds were commenced during the year and several supporters engaged in fundraising activities.
The charity has a healthy financial position at the end of the year relative to anticipated expenditure in the next 12 months.
It is expected that our main source of income will be from fund raising activities and donations.
The charity’s policy on reserves is to hold the equivalent of 12 months anticipated expenditure plus a fund for future research funding.
The Trustees have no concern about the ability of the charity to continue as a going concern.
Structure, Governance and Management
The Charity is a Charitable Incorporated Organisation (a CIO). It was registered in its current legal form on 14 November 2017. The charity was previously an unincorporated association but changed its legal form to a CIO. The assets of the unincorporated association were transferred to the CIO in April 2018. It has a single tier structure and as such the trustees are the members of the charity.
Appointment of trustees
Trustees at the end of the year are parents of children who have lost a child to Krabbe Disease but there is no requirement for trustees to have lost a child. The Trustees can appoint other trustees who have suitable qualifications and interest in Krabbe Disease.
There must be a minimum of three trustees.
Reference and Administrative details
Charity name Krabbe UK
Charity registered in England and Wales 1174472
Charity registered in Scotland Number SC047927
2
Registered Address 2 Sage Close, Beverley, East Yorkshire HU17 8WH
Trustees to end of reporting period
Lindsey Dodds
Colin Brown
Andrew Gibson
3
KRABBE UK RECEIPTS AND PAYMENTS ACCOUNT YEAR ENDED 31 MARCH 2025
| RECEIPTS | |
|---|---|
| Donations | 1065.00 |
| Just Giving | 2666.76 |
| Easy Fundraising | 46.53 |
| Facebook Donate | 0.00 |
| Amazon Smile | 0.00 |
| Gift Aid | 0.00 |
| Bank Interest | 1890.26 |
| Total income | 5668.55 |
| EXPENDITURE | |
| Marketing | 0.00 |
| Family Support | 0.00 |
| Insurance | 522.14 |
| MetabERN | 0.00 |
| Fundraising Materials | 0.00 |
| Subscriptions | 351.00 |
| Bank Charges | 0.00 |
| Total expenditure | 873.14 |
| SURPLUS (DEFICIT) | £4,795.41 |
| RESERVES | |
| Brought forward - Virgin Money Account | £109,458.44 |
| Surplus/deficit for the year | £4,795.41 |
| Carried forward | £114,253.85 |
| Represented by : | |
| Virgin Money Bank Account | £114,253.85 |
| Total Funds Held | £114,253.85 |
Independent Examinerfs Report I report to the trustees on my examination of the accounts of Krabbe UK ("the Charity") for the year ended 31 March 2025 As the charity trustees of the Charity, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ("the Act"). I report in respect of my examination of the Charity's accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect: accounting records were not kept in accordance with section 130 of the Act or the accounts do not accord with the accounting records I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached. I report on the accounts of the charity for the year ended 31 March 2025. Name: Address: (g rtÉT COALIDb•H OF hfLrrjq ,FIKE, LY 14PO Date: 18.11.202