DocuSign Envelope ID: C8923CDE-2DFF-4CEF-8667-50B34AB8BCCC
Charity number: 1182818
(England and Wales)
ACRODYSOSTOSIS SUPPORT & RESEARCH
Report of the Trustees and Unaudited Financial Statements
For the year ended 31 December 2021
DocuSign Envelope ID: C8923CDE-2DFF-4CEF-8667-50B34AB8BCCC
ACRODYSOSTOSIS SUPPORT & RESEARCH Contents Page For the year ended 31 December 2021
| Report of the Trustees | 1 to 4 |
|---|---|
| Independent Examiner's Report to the Trustees | 5 |
| Statement of Financial Activities | 6 |
| Statement of Financial Position | 7 |
| Notes to the Financial Statements | 8 to 12 |
| Detailed Statement of Financial Activities | 13 |
DocuSign Envelope ID: C8923CDE-2DFF-4CEF-8667-50B34AB8BCCC
ACRODYSOSTOSIS SUPPORT & RESEARCH
Report of the Trustees
For the year ended 31 December 2021
The Trustees, who are also directors for the purposes of company law, have pleasure in presenting their report and the financial statements for the charitable company for the year ended 31 December 2021. The Trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and the Republic of Ireland (FRS 102) (effective 1 January 2015).
OBJECTIVES AND ACTIVITIES
Charitable objectives:
To relieve the needs of those affected by Acrodysostosis by promoting greater understanding of the causes, symptoms, and treatment of Acrodysostosis in all its forms including:
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promoting research and sharing and disseminating of results of such research for the benefit of the general public; and
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raising public awareness of the symptoms, needs and related medical conditions of those living with Acrodysostosis
Charitable activities:
The Trustees ensure that sufficient attention is paid to fundraising activities, monitoring grant funding opportunities and manage the charity's assets to ensure its sustainability and ability to carry out its charitable objectives. The charity relies heavily on its volunteers as it has no paid members of staff. In 2021 three more Ambassadors from the Acrodysostosis community were added to the team the charity now have 6 in total. They are made up of patients with Type 1 and 2 as well as parents, and their main role is to raise awareness of the condition.
Objectives and aims
The trustees have considered the Charity Commision's guidance on public benefit, including the guidance 'public benefit: running a charity (PB2)'.
The charity’s objectives are to offer support and information to families affected by Acrodysostosis.
Acrodysostosis Support & Research liaises closely with researchers at UCL Great Ormond St Hospital (UCL GOSH) with regards to the ongoing pioneering research into Acrodysostosis. It also works constructively and in partnership with other agencies and organisations to continually improve support for families affected by Acrodysostosis - to change lives and make a difference to those living with the condition.
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ACRODYSOSTOSIS SUPPORT & RESEARCH
Report of the Trustees Continued
For the year ended 31 December 2021
ACHIEVEMENTS AND PERFORMANCE
Key activities and achievements throughout the year include:
Peer Support:
- One of the main aims of the charity is to bring together families and the Acrodysostosis community to share experiences and provide peer support through the Acrodysostosis network.The charity provide this support to their families via their ambassadors who are always available
to listen and provide emotional and practical help to their Acrodysostosis Families.
- Acrodysostosis have continued to provide a range of information offering guidance and support for Acrodysostosis families.
Covid-19:
Acrodysostosis families have found comfort from hearing and sharing experiences via the Acrodysostosis private Support Facebook group as well as various zoom meetings which any of the Acrodysostosis community could attend and get the opportunity to meet virtually.
Acrodsysostosis Support & Research have continued to provide a range of information offering guidance and support for Acrodysostosis families including
Medical Advisory Board (MAB):
The MAB was formed to guide the trustees in scientific matters, including research efforts and direction, and consists of renowned experts in the field. The MAB continues to meet regularly to facilitate the expanding body of knowledge around Acrodysostosis so families can be better supported - the trustees are very grateful to the MAB members for their dedication and commitment to helping Acrodysostosis
families. The MAB along with Trustees and Ambassadors take the lead in identifying research opportunities.
Communications:
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Communications with those within the Acrodysostosis community and the general public through the Acrodysostosis website, and via social media.
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On Facebook a public page for the general public is used as their primary form of outbound communication. The charity also have a closed support group for families affected by the condition.
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Acrodysostosis also has active Twitter and Instagram pages.
Research:
- In 2020 Acrodysostosis Support & Research formally entered into a research partnership with Great Ormond Street Hospital Children’s Charity (GOSHCC) & Sparks for its national funding call 2020/21, which aims to tackle the understanding and treatment of rare diseases in children. The successful application was announced in the April 2021 and was awarded to Prof. Patrizia Ferretti at UCL the aim of which is to establish human models of acrodysostosis to select disease/patient-specific druggable targets aimed at normalizing development in affected children, hence improving their quality of life. As part of the partnership, Acrodysostosis Support & Research has provided 25% (£62,500) of the project costs. The charity are delighted to confirmed that that this 3 year research project started in the Autumn of 2021. The charity are in regular contact with the research team who provide them and their community with updates and the charity are already
looking for ways to partner on other projects in the future.
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Acrodysostosis Support & Research continue to work with it’s MAB, Acrodysostosis Community and OpenApp to launch a global Acrodysostosis patient registry, in the meantime the charity have been busy collecting data from the community in the first survey of its kind.
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Acrodysostosis Support and Research collaborated on a growth research project and a paper entitled "acrodysostosis: Growth patterns and OUTCOME ON growth hormone Therapy for short stature" by Ertl, Diana-Alexandra will be published soon. The Chair and one of the Ambassadors will be included as co-authors.
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Dr Melissa Bowerman with the charity’s support was successful with an application to GEMM aimed at generating one mouse model and this ACRDYS 2 mouse model is currently being generated and should be received in the lab by the end of the 2021. Funds will need to be raised to support the characterization of this GEMM-funded ACRDYS2 mouse model.
Raising Awareness:
- In July 2021 the Chair Nina Knight did a video interview with Shannon Gunn for the Line Genomics Series.
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ACRODYSOSTOSIS SUPPORT & RESEARCH
Report of the Trustees Continued
For the year ended 31 December 2021
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A Parent, Advocate, Ambassador; Kymie Gleeson in Australia in several articles for local publications; Source Magazine print 10K and 37K digital subscribers, Take 5 magazine circulation 15K per month and 75K digital subscribers.
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A Parent, Advocate, Ambassador; Kym Stanley in the UK through the organisation Medics 4 Rare Disease collaborated with a medical student to write an essay on Acrodysostosis for an essay competition.
Fundraising:
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Much of the fundraising for 2021 was cancelled due to the continued COVID-19 pandemic. Acrodysostosis Support & Research’s Crowdfunding Project continued to raise money for January & February 2021. The final total raised from this project was £90K. This project enlisted the support of 70 families affected by acrodysostosis, who all fundraised in 32 countries, and they got 1500 supporters who donated. This was a huge success Acrodysostosis Support & Research the charity is very grateful to everyone who took part. All funds from this project have been and will continue to be used for research or improving the lives of those affected by Acrodysostosis.
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In January 2021 the charity was awarded £3416..66 from Genetic Disorders for the GDUK Grant this has been allocated for a family day.
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In Feb 2021 Chubb Services donated £500.00 towards research.
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In July 2021, 3 baccalaureate students, Yu Ru Liu, Shailin Katebiyan & Isabel Van der Burg from Aloha College in Marbella as part of their SECCA, chose Acrodysostosis Support and Research and the Debra Charity as charities they wanted to support and they hosted a charity gala which raised £3783.52 for Acrodysostosis Support & Research.
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In October 2021 Costello Medical carried out £13774.00 worth of work for Acrodysostosis Support & Research on a pro bono basis, with their time they created a health care professional information leaflet. This leaflet has been completed in collaboration with the Acrodysostosis
community, the MAB and Costello Medical. It’s the first of kind and will used as tool to inform HCP’s, Acrodysostosis Families and to raise awareness.
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In October 2021 Julie Blunt a private donor, gifted £1000.00 to Acrodysostosis Support & Research.
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In addition to the funds raised parents, patients and friends of the charity have volunteered 100’s of hours to work for Acrodysostosis Support & Research in their roles to support the families and these same people are constantly on a quest to promote the acceleration of the science for this disease, so that one day there will be viable treatments and perhaps a cure.
FINANCIAL REVIEW
Financial review and reserves policy:
The charity Trustees continually monitor cash reserves to ensure its financial stability.
Acrodysostosis Support & Research is committed to building a reserves policy to ensure there is enough funding to cover one year's operating costs, the expenses for one family meet up per year and to fund research opportunities.
The charity has no outstanding financial obligations nor outstanding debts. The charity's principal source of funds comes from the general public, either through donations or at one-off fundraising events.
Going concern
The Trustees have assessed the charities finances and can confirm there is no reason why the chairty will not continue to operate for at least 12 months passed the date of approval of these accounts.
REFERENCE AND ADMINISTRATIVE INFORMATION
Name of Charity ACRODYSOSTOSIS SUPPORT & RESEARCH Charity registration number 1182818 Principal address Bath House, Cudworth Lane Newdigate Dorking Surrey SE15 5AF
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ACRODYSOSTOSIS SUPPORT & RESEARCH Report of the Trustees Continued
For the year ended 31 December 2021
Trustees
The trustees and officers serving during the year and since the year end were as follows:
Independent examiners
Jan Sara Hine Sarah Louise Denney Nina Samantha Knight Beach Accountants Limited Chartered Certified Accountants 10 Blue Sky Way Monkton Business Park South South Tyneside NE31 2EQ
Approved by the Board of Trustees and signed on its behalf by
............................................................................. 31 October 2022
Nina Samantha Knight
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ACRODYSOSTOSIS SUPPORT & RESEARCH
Independent Examiners Report to the Trustees
For the year ended 31 December 2021
I report to the trustees on my examination of the accounts of the charitable company for the year ended 31 December 2021.
Responsibilities and basis of report
As the charity Trustees, who are also directors for the purposes of company law, are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').
Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts carried out under section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.
Independent examiners statement
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
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accounting records were not kept in respect of the Company as required by section 386 of the 2006 Act; or
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the accounts do not accord with those records; or
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the accounts do not comply with the requirements of section 396 of the 2006 Act other than any requirement that the accounts give a 'true and fair view' which is not a matter considered as part of an independent examination; or
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the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
Beach Accountants Limited Chartered Certified Accountants 10 Blue Sky Way Monkton Business Park South South Tyneside NE31 2EQ
31 October 2022
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ACRODYSOSTOSIS SUPPORT & RESEARCH
Statement of Financial Activities (including Income and Expenditure Account) For the year ended 31 December 2021
| Notes | Unrestricted | Restricted | 2021 | 2020 | |
|---|---|---|---|---|---|
| funds | funds | ||||
| £ | £ | £ | £ | ||
| Income and endowments from: | |||||
| Donations and legacies | 2 | 8,974 | 3,417 | 12,391 | 89,873 |
| Total | 8,974 | 3,417 | 12,391 | 89,873 | |
| Expenditure on: | |||||
| Raising funds | 3 | (62,742) | - | (62,742) | (3,309) |
| Charitable activities | 4/5 | (576) | - | (576) | (540) |
| Total | (63,318) | - | (63,318) | (3,849) | |
| Net income/expenditure | (54,344) | 3,417 | (50,927) | 86,024 | |
| Reconciliation of funds | |||||
| Total funds brought forward | 86,024 | - | 86,024 | - | |
| Total funds carried forward | 31,680 | 3,417 | 35,097 | 86,024 |
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ACRODYSOSTOSIS SUPPORT & RESEARCH Statement of Financial Position As at 31 December 2021
| Notes Current assets 11 Debtors Cash at bank and in hand Creditors: amounts falling due within one year 12 Net current assets Total assets less current liabilities Net assets The funds of the charity Restricted income funds 13 Unrestricted income funds 13 Total funds |
£ 2021 63 35,610 35,673 (576) 35,097 35,097 35,097 3,417 31,680 35,097 |
£ 2020 - 86,564 |
|---|---|---|
| 86,564 | ||
| (540) 86,024 |
||
| 86,024 | ||
| 86,024 | ||
| - 86,024 |
||
| 86,024 |
For the year ended 31 December 2021 the company was entitled to exemption from audit under section 477 of the Companies Act 2006 relating to small companies.
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The members have not required the company to obtain an audit of its accounts for the year in question in accordance with section
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476,
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The trustees acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records
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and the preparation of accounts. These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies’ regime.
The financial statements were approved and authorised for issue by the Board and signed on its behalf by:
Nina Samantha Knight Trustee
31 October 2022
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ACRODYSOSTOSIS SUPPORT & RESEARCH
Notes to the Financial Statements
For the year ended 31 December 2021
1. Accounting Policies
Basis of accounting
The financial statements have been prepared under the historical cost convention, except for investments which are included at market value and the revaluation of certain fixed assets and in accordance with the Charities SORP (FRS 102) ‘Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015)’, Financial Reporting Standard 102 the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102), and the Companies Act 2006.
ACRODYSOSTOSIS SUPPORT & RESEARCH meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).
Going concern
The Trustees have assessed the charities finances and can confirm there is no reason why the chairty will not continue to operate for at least 12 months passed the date of approval of these accounts.
2. Income from donations and legacies
| Donations received xpenditure on generating donations and legacies Unrestricted funds Donations Support costs osts of charitable activities by fund type Unrestricted funds Support costs osts of charitable activities by activity type Donation collections |
Restricted funds Unrestricted funds £ £ 3,417 8,974 3,417 8,974 |
2021 £ 12,391 12,391 2021 £ 62,500 242 62,742 2021 £ 576 2021 £ 576 |
2020 £ 89,873 |
|---|---|---|---|
| 89,873 | |||
| 2020 £ - 3,309 |
|||
| 3,309 | |||
| 2020 £ 540 2020 £ 540 |
3. Expenditure on generating donations and legacies
4. Costs of charitable activities by fund type
5. Costs of charitable activities by activity type
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ACRODYSOSTOSIS SUPPORT & RESEARCH Notes to the Financial Statements Continued
For the year ended 31 December 2021
| 6. Analysis of support costs Advertising Advertising Governance costs Accountancy fees Collection fees Partner fees Exchange (Profit)/Loss Insurance Subscriptions 7. Net income/(expenditure) for the year This is stated after charging/(crediting): Accountancy fees 8. Staff costs and emoluments General staff 9. Trustee remuneration and related party transactions |
2021 £ 159 576 - 49 (341) 194 181 659 818 2021 £ 576 2021 0 0 |
2020 £ - 540 2,012 1,158 139 - - |
|---|---|---|
| 3,849 | ||
| 3,849 | ||
| 2020 £ 540 |
||
| 2020 0 |
||
| 0 | ||
There are no disclosable transactions with related parties that occured in the year.
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ACRODYSOSTOSIS SUPPORT & RESEARCH Notes to the Financial Statements Continued
For the year ended 31 December 2021
10. Comparative for the Statement of Financial Activities
The comparative year values on the Statement of Financial Activites are for unrestricted funds.
11. Debtors
| Amounts due within one year: Prepayments and accrued income Creditors: amounts falling due within one year Accruals and deferred income |
2021 £ 63 63 2021 £ 576 576 |
2020 £ - |
|---|---|---|
| - | ||
| 2020 £ 540 |
||
| 540 |
12. Creditors: amounts falling due within one year
13. Movement in funds
| Unrestricted Funds General General Unrestricted Funds - Previous year General General |
Balance at 01/01/2021 £ 86,024 86,024 Balance at 01/01/2020 £ - - |
Incoming resources £ 8,974 8,974 Incoming resources £ 89,873 89,873 |
Outgoing resources £ (63,318) (63,318) Outgoing resources £ (3,849) (3,849) |
Balance at 31/12/2021 £ 31,680 |
|---|---|---|---|---|
| 31,680 | ||||
| Balance at 31/12/2020 £ 86,024 |
||||
| 86,024 |
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ACRODYSOSTOSIS SUPPORT & RESEARCH Notes to the Financial Statements Continued
For the year ended 31 December 2021
Purpose of unrestricted Funds
General
To fulfil the principal objectives of the charity.
Restricted Funds
| Family Day Restricted Funds - Previous year |
Incoming resources £ 3,417 3,417 Incoming resources £ - |
Balance at 31/12/2021 £ 3,417 |
|---|---|---|
| 3,417 | ||
| Balance at 31/12/2020 £ |
||
| - |
Purpose of restricted funds
Family Day Delivering a family day for attendies as prescribed by the donors.
14. Analysis of net assets between funds
| Unrestricted funds General General Restricted funds Family Day |
Net current assets / (liabilities) Net Assets £ £ 31,680 31,680 3,417 3,417 |
|---|---|
| 35,097 35,097 |
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| For the year ended 31 December 2021 ACRODYSOSTOSIS SUPPORT & RESEARCH Notes to the Financial Statements Continued Previous year Unrestricted funds General General Restricted funds |
Net current assets / (liabilities) Net Assets £ £ 86,024 86,024 |
|---|---|
| 86,024 86,024 |
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ACRODYSOSTOSIS SUPPORT & RESEARCH Detailed Statement of Financial Activities
For the year ended 31 December 2021
| INCOME AND ENDOWMENT Donations and legacies Donations Total incoming resources EXPENDITURE Raising donations and legacies Donations SUPPORT COSTS Advertising Advertising Governance costs Governance costs Governance costs Total resources expended Net Expenditure |
£ 2021 12,391 12,391 12,391 (62,500) (62,500) (159) (159) (83) (576) (659) (63,318) (50,927) |
£ 2020 89,873 |
|---|---|---|
| 89,873 | ||
| 89,873 - |
||
| - - |
||
| - (3,309) (540) |
||
| (3,849) | ||
| (3,849) | ||
| 86,024 |
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This page does not form part of the statutory financial statements