CHARITY COMMISSION FOR ENGLAND AND WALES Trustees, Annual Report for the period From 1st April 2021 Period start date to 315t March 2022 Period end date Charity name: UK ATTR Amyloidosis Patients, Association (UKATPA) Charity registration number: 1183624 Objectives and Activities SORP reference Para 1.17 Summary of the purposes of the charity as set out in its governing document The purposes of the charity {CIO) are the lief of sickness and the preservation and protection of good health among people in the United Kingdom living with the medical condition AThR Amyloidosis. Summary of the main activities in relation to those purposes for the public benefit the activities, projects or seNices identified in the accounts. Para 1.17and 1.19 In planning our activities for the year, we kept in mind the Charities objectives and the Charity Commission's guidance on public benefit. Our objective is.. a) providing information, support and advice to people living with the Condition, their families, and carers. b) advocating to ensure that every person has limely and effective diagnosis, treatment, and care of the Condition. cl working closely with all slakeholders to facilitate the availability of effective treatments for the Condition. d) funding and supporting research lo advance scientific understanding of the Condition and its effective treatment and to publish the useful results thereof for the public benefit. Statement confimiing whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit Para 1.18 The main activities associated with our objectives were fomed based on the guidance issued by the Charity Commission on public benefit. Additional infomiation (optional) ouma choose to include further statements where relevant about.. SORP referenGe NIA Para 1 38 Policy on grant making. NIA Pafa 1.38 Policy on social investment including program related investment.
All trustees are volunteers. Contribution made by volunteers. Para 1.38 Other Achievements and Performance SORP ref8r8n¢e With the relaxation of Covid restrictions this year we wère able to explore more fa-to-faCe adivilies. Below is a breakdown of all the main achievements.. Summary of the main achievements of the charity, identifying the difference th8 charity's work has made to the circuMstanS of its beneficiaries and any Wer benefits to society. Para 1.20 We secured funding for and delivered a new website offering information and advice for anyone with an interest in AThR Amyloidosis. It is more patient, and family focused than our original website. We have continLted our outreach work with the Afro-caribbean community. In partnership wilh other organisalions {Pharnia and NHS) we have delivered the 'One Slep Further, campaign which is a combination of videos and support material that is on our website and booklets to support patients and carers. Developed a 5-year strategy lo help the organisation grow and deliver high quality services. Worked to develop a network of interested professionals and palienls. Attended conferences to raise awareness of Amyloidosis and UKATPA among key professional groups IBHF elc). Additional information (optional) You ma choose to include further statements where relevant about.. NIA Achievements against objectives set. Para 1.41
NIA Perfomiance of fundraising activities against objectives set. Para 1.41 NIA Investment performance against objectives Para 141 Other Financial Review Review of the charity s financial position at the end of the eriod Statement explaining the policy for holding reserves statin are held Number of reserves held Reasons for holding zero reserves Details of fund materially in deficit Explanation of any uncertainties about the charity continuing as a going concern Para 1.21 Cash at bank at 311312022 was £51.9K in unrestricted funds. Para 1.22 NIA Para 1.22 NIA NIA Para 1.22 Par8 1.24 NIA Para 1.23 NIA Additional information {optionall You ma choose to include further statements where relevant aboLrt'. Our main source offunds this year has been grants and donations. The charity's principal sources of funds (including any fundraising) Pao147 As a small charity we do not have this. Investment policy and objectives including any social investment policy adopted. Para 1.46 The main risk to the charity is the restrictions that COVID-19 has presented. A descnption of the principal risks facing the charity. Para 1.46
other
Structure, Governance and Management Description of Gharity's trusts.. Type of governing document Para 1.25 (Foundation model constilulion} How is the charity constituted? Para 1.25 ,raled Charitable Incorporated Organisation {ClO) Trustee selection methods including details of any constitutional provisions e.g., election lo post or name of any person or body entitled lo appoint one or more trustees Para 1.25 This forms part ofthe governing document. New trustees are selected by current trustees. Additional information loptionall You ma choose lo include further slalements where relevant about.. Forms part of the Foundation, model constitution. Policies and procedures adopted for the induction and training of trustees. Para 1.51 We have five trustees.. Chairman Treasurer Secretary Trustee Trustee We do not belong to a wider network. The charity s organisalional structure and any wider network with which the charity works. Para 1 51 NIA Relationship wrth any related parties Pafa 1.51 Other Reference and Administrative details Charit name Olher name the charit uses istered charil number Charity's principal address UK AThR Am loidosis Patients, Association NIA 1183624 The Old Parsonage. Hyde Lane, Hartington. SK17 OAP UKATPA
Names of the charity trustees who manage the charity Dat•s aetèd if not for full ear Offlc• Ilf any) Trustee name Name of p8rson lor body) entitled oint trustee ifan Carlos Heras - Palou Vincent Nicholas Chairman Treasurer David Gregory Ruth Bramwell Paul Pozzo Secretary Trustee Trustee 10 12 13 14 15 16 17 18 19 20 Cor orate trustees - names of the directors at the date the re Director name ortwasa roved. NIA Name of trustees holding litle lo property belonging to the charity. Trusteè name Dates acted if not for full ear NIA Funds held as custodian trustees on behalf of others. Description of the assets held in this capacity NIA
Name and objects of the charity on whose behalf the assets are held and how these falls within the custodian charity's objects. NIA Details of arrangements for safe custody and segregation of such assets from the charily's own assets NIA Additional information (optional) Names and addresses of advisers (Optional information) Type of Name Address adviser NIA Name of chief executive or names of senior staff members (Optional infomiationl Exemptions from disclosure Reason for non-disclosure of ke ersonnel details NIA Other o tional information Declarations The trustees declare that they have approved the trustees. report above. Signed on behalf of the charity's trustees Signature(sl Full name(sl Position l•.g.. Secretary, Chair, etc) Vincenl Nicholas Treasurer Date 10. January 2023
UK ATTR Amyloidosis Patients Association (AKATPA) INCOME SUMMARY YEAR ENDING: 31/03/2022
| DATE | CUSTOMER | £ |
|---|---|---|
| 10/09/2021 | Alnylam | £3,500.00 |
| 28/10/2021 | Alnylam | £5,000.00 |
| 01/02/2022 | Charitable Giving | £97.52 |
| 29/12/2021 | Donats Oayments | £61.35 |
| 22/11/2021 | Eidos Therapeutcs | £8,500.00 |
| 03/09/2021 | Intellia Therapeut | £3,536.35 |
| 10/08/2021 | Just Giving | £78.08 |
| 18/10/2021 | Just Giving | £196.00 |
| 02/08/2021 | Opinion Health | £250.00 |
| 02/03/22 | Paypal | £658.25 |
| 03/12/2021 | Pfzer | £5,000.00 |
| 15/06/2021 | SWED ORPH BIOV LTD | £5,000.00 |
| 13/09/2021 | SWED ORPH BIOV LTD | £666.65 |
| 30/11/2021 | SWED ORPH BIOV LTD | £100.00 |
| 02/02/22 | UK Online Giving | £34.92 |
£32,679.12
UK ATTR Amyloidosis Patients Association (AKATPA) EXPENDITURE DETAIL YEAR ENDING 31/03/2022
| DATE | SUPPLIER | Total | TRAINING | CAR, VAN AND TRAVEL EXPENSES |
WAGES, SALARIES AND STAFF COSTS |
RENT, RATES, POWER & INSURANCE |
DONATIONS | ACCOUNTANCY, LEGAL & PROFESSIONAL COSTS |
INTEREST ON BANK AND OTHER LOANS |
TELEPHONE, FAX, STATIONERY AND OTHER OFFICE COSTS |
ADVERTISING/W EBSITE |
BANK, CREDIT CARD CHARGES |
OTHER BUSINESS EXPENSES |
CAPITAL PURCHASES (OVER £200) |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 28/05/2021 | Kate Taylor 0011 | 665.28 | 665.28 | |||||||||||
| 28/05/2021 | Kate Taylor 0012 | 806.4 | 806.4 | |||||||||||
| 16/06/2021 | Kate Taylor 0013 | 887.04 | 887.04 | |||||||||||
| 14/07/2021 | Blonde Ltd | 2100 | 2100 | |||||||||||
| 23/08/2021 | Kate Taylor 0016 | 423 | 423 | |||||||||||
| 03/09/2021 | Kate Taylor 0017 | 564.48 | 564.48 | |||||||||||
| 24/09/2021 | Blonde Ltd | 2100 | 2100 | |||||||||||
| 07/10/2021 | DG NCVO Training | 55 | 55 | |||||||||||
| 07/10/2021 | DG OSF Film Mileage | 144.9 | 144.9 | |||||||||||
| 07/10/2021 | DG SOBI Video July21 | 316.65 | 166.65 | 150 | ||||||||||
| 07/10/2021 | PP WT Video Mileage | 48.6 | 48.6 | |||||||||||
| 07/10/2021 | VGN NCVO TrainingOct 21 | 55 | 55 | |||||||||||
| 22/10/2021 | Donaton UKAPTA Rosaline Callaghan | 200 | 200 | |||||||||||
| 22/11/2021 | Kate Taylor 0019 | 624.96 | 624.96 | |||||||||||
| 22/11/2021 | Kate Taylor 0020 | 866.88 | 866.88 | |||||||||||
| 22/11/2021 | Kate Taylor 0021 | 725.75 | 725.75 | |||||||||||
| 22/11/2021 | SallyWilliams 107 | 100 | 100 | |||||||||||
| 24/11/2021 | AKT Health Ltd 1293 | 7200 | 7200 | |||||||||||
| 30/11/2021 | ICO | 35 | 35 | |||||||||||
| 01/12/2021 | PP Oct Exp | 61.84 | 55 | 6.84 | ||||||||||
| 01/12/2021 | Another Planet | 1049.95 | 1049.95 | |||||||||||
| 06/01/2022 | Bank Charges | 5 | 5 | |||||||||||
| 02/02/2022 | Donaton UKAPTA Rosaline Callaghan | 3000 | 3000 | |||||||||||
| 06/02/2022 | Bank Charges | 5 | 5 | |||||||||||
| 20/02/2022 | VGN BridgeBio | 75.65 | 75.65 | |||||||||||
| 20/02/2022 | PP Postage | 99.3 | 99.3 | |||||||||||
| 20/02/2022 | Everso Creatve | 7769.58 | 7769.58 | |||||||||||
| 09/03/2022 | Bank Charges | 5 | 5 | |||||||||||
| 16/03/2022 | VGN Alnylam | 150.45 | 150.45 | |||||||||||
| ### | LibbyMoore OSF Filming | 239.15 | 39.15 | 200 | ||||||||||
| 21/03/2022 | H & K McLean OSF Filming | 548.6 | 48.6 | 500 | ||||||||||
| 30928.46 | 165 | 2891.59 | 4196.2 | 3200 | 135 | 106.14 | 20219.53 | 15 |
| UK ATTR Amyloidosis Patents Associaton (AKATPA) | ||
|---|---|---|
| INCOME & EXPENDITURE ACCOUNT | ||
| YEAR ENDING: | 31/03/2022 | |
| INCOME | ||
| SALES | 32679 | |
| EXPENDITURE | ||
| TRAINING | 165 | |
| CAR, VAN AND TRAVEL EXPENSES | 2892 | |
| WAGES, SALARIES AND STAFF COSTS | 4196 | |
| RENT, RATES, POWER & INSURANCE | ||
| DONATIONS | 3200 | |
| ACCOUNTANCY, LEGAL & PROFESSIONAL COSTS | 135 | |
| INTEREST ON BANK AND OTHER LOANS | ||
| TELEPHONE, FAX, STATIONERY AND OTHER OFFICE COSTS | 106 | |
| ADVERTISING/WEBSITE | 20220 | |
| BANK, CREDIT CARD CHARGES | 15 | |
| OTHER BUSINESS EXPENSES | ||
| -30928 | ||
| PROFIT/LOSS IN YEAR | 1751 |
UK ATTR Amyloidosis Patients Association (AKATPA) BALANCE SHEET ITEMS
CAPITAL PURCHASES (OVER £200)
UK ATTR Amyloidosis Patients Association (AKATPA) YEAR ENDING: 31/03/2022
| Opening Balance | 50197.09 |
|---|---|
| Purchases | 30928.46 |
| Sales/Donatons | 32679.12 |
| End Balance | 51947.75 |
| Bank Balance as per | |
| bank statement at | |
| 31/03/21 | 51947.75 |
Difference
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