Krabbe UK
Trustees’ Annual Report For the year ended 31 March 2021
DRAFT FOR REVIEW 15/01/22
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 2020 with video conferences instead of face to face meetings.
Due to the COVID 19 pandemic, we were unable to hold a Family Support Weekend during 2020. We plan to continue this activity in the future when it is safe to do so.
The charity continued to partner with Great Ormond Street Hospital Children’s Charity and Sparks Charity to fund research by Dr Sara Benedetti from University College London entitled Targeting the blood-brain barrier endothelium to increase hematopoietic stem cell engraftment for lysosomal storage disease gene and cell therapy. We also joined GOSH in the 2020/2021 call for research.
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.
We are members of the United Kingdom LSD Collaborative.
1
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, even through the challenging time of the COVID19 pandemic.
Gene Therapy Research continues in the US with Krabbe UK trustees providing advocacy support and information to ensure that this important research continues.
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 a number of 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.
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.
2
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
Registered Address 2 Sage Close, Beverley, East Yorkshire HU17 8WH
Current Trustees
Andrew Gibson
Colin Brown
Lindsey Dodds
3
| RECEIPTS | 9951.49 |
|---|---|
| Donations | 1.477.44 |
| JustGiving | 28.69 |
| EasyFundraising | 1480.26 |
| FacebookDonate | 40.71 |
| AmazonSmile | 318.92 |
| Gift Aid | 0.76 |
| Banklnterest | |
| 13298.23 | |
| Total income | |
| EXPENDITURE | 32.78 |
| Marketing | 18s.86 |
| FamilYSuPPort | 648.74 |
| lnsurance | 1.00 |
| MCIAbERN FundraisinEMaterials |
312.00 185.00 |
| 5ubscriPtions Bank Charges |
73.s0 |
| Total exPenditure | 1438.88 |
| SURPLUS(DEFICIT) | f11,859.35 |
| RESERVES | |
| Broughtforward-BarclaysAccour | f73,066.77 |
| Surplus/deficitfortheYear | €11,859.35 |
| Carriedforward | 884,926.L2 |
| RepresentedbY: | |
| BarclaYs BankAccount | €79,348.38 |
| VirginMoneYBankAccount | f5,577.74 |
| TotalFundsHeld | c84,926.L2 |