Advocacy For Neuroacanthocytosis Patient - Charities report - 18.1
Advocacy For Neuroacanthocytosis Patient - Charities report - 18.1
| REGISTERED COMPANY NUMBER: |
| REGISTERED CHARITY NUMBER: |
| Report of the Trustees and |
| Unaudited Financial Statements for the Year Ended |
| 31 August 2017 |
| for |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Contents of the Financial Statements |
| for the Year Ended 31 August 2017 |
| Page |
| Report of the Trustees | 1 to 4 |
| Independent Examiner's Report | 5 |
| Statement of Financial Activities | 6 |
| Balance Sheet | 7 to 8 |
| Notes to the Financial Statements | 9 to 12 |
| Reconciliation of Income and Expenditure | 13 |
| Reconciliation of Funds | 14 to 15 |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Report of the Trustees |
| for the Year Ended 31 August 2017 |
| The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with |
| the financial statements of the charity for the year ended 31 August 2017. 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 Republic of Ireland (FRS 102) |
| (effective 1 January 2015). |
| OBJECTIVES AND ACTIVITIES |
| Public benefit |
| The Advocacy for Neuroacanthocytosis Patients benefits a group of patients around the world who suffer from three |
| vary rare chronic neurodegenerative conditions (Chorea Acanthocytosis (ChAc), McLeod Syndrome and Huntington's |
| Disease-like 2 (HDL2) that often begins in early adulthood and leave patients wholly dependent on carers. There are |
| only 12 known patients in the United Kingdom and 45-50 cases in the United States. The world-wide figure is only |
| speculative, but it is likely to be fewer than 1,000. The Advocacy works with patient groups for Huntington's disease |
| and neurodegeneration with brain iron accumulation that includes PKAN, a related disease that affects children. We |
| are the only charity supporting those with the adult neuroacanthocytosis diseases. |
| The specific public benefit objectives of the Advocacy are: |
| 1) To promote and protect the physical and mental health of of sufferers of neuroacanthocytosis diseases and their |
| families through the provision of support, education and practical advice. |
| 2) To advance the education of health professionals and the general public in all areas relating to neuroacanthocytosis. |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Report of the Trustees |
| for the Year Ended 31 August 2017 |
| ACHIEVEMENT AND PERFORMANCE |
| Charitable activities |
| Promoting and protecting the physical and mental health of sufferers of neuroacanthocytosis diseases and their families |
| through the provision of support, education and practical advice. |
| 1) In October and March we published our e-newsletter that supports the growth of a community by sharing patient |
| experiences and information that may be of practical help with the debilitating symptoms that affect patients that begin |
| in early adulthood and leave patients wholly dependent on carers. Volunteers help translate it into other languages. |
| Our direct contact with the families of newly diagnosed patients has encouraged people who otherwise feel completely |
| isolated by this very rare disease. |
| 2) Patients have added their stories to the multi-lingual website sharing experiences of things that have both helped |
| patients' well-being and suggested ways for patients to support research to find a therapy. Through email, phone and |
| personal meetings, we have frequent contact with the families of patients and we bring their voices and experiences to |
| the medical community. |
| 3) The Advocacy supports a free diagnostic service offered by Ludwig-Maximilians University, Munich. Since 2006 |
| over 800 patients have had the diagnostic test. |
| Advancing the education of health professionals and the general public in all areas relating to Neuroacanthocytosis. |
| 1) The eighth symposium took place May13-15, 2016 in Ann Arbor Michigan, USA. It brought together not only |
| scientists and consultants to explore the new avenues for research but also twelve patients and 18 family members for |
| the first ever family meeting. The next meeting will be held in Dresden in March 2018. |
| 2) The Advocacy supported the creation of an international patient REGISTRY in which consistent histories of |
| anonymous, diagnosed patients can be studied and eventually be a source of candidates for drug trials. The NA |
| REGISTRY is hosted by the European Huntington's Disease Network. |
| 3) The Advocacy supported the E-RARE group of researchers by organizing monthly telephone conferences for the |
| researchers and continues these calls to promote the sharing of progress towards a better understanding of the workings |
| of this disease. |
| FINANCIAL REVIEW |
| The charity ended the year with reserves at 31 August 2017 of £32,911 with no potential payments for future research |
| grants. The charity designates funds specifically for any grants where research has already commenced. |
| The Advocacy's policy is to commit its full resources to its educational and research work each year. The charity has |
| very limited expenses as the work is done by volunteers using home office facilities. |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Report of the Trustees |
| for the Year Ended 31 August 2017 |
| FUTURE PLANS |
| The charity plans to continue to focus on :- |
| 1) Communicating with patients and their families through personal contact by email, phone, visits and through the |
| renewed website to increase the communication between patients' families. We will continue to bring news of |
| developing therapies such as deep brain stimulation and to present the opportunity for patients to help with tissue |
| donations for expanding research. Patients' families can exchange messages of experiences and concern through the |
| "Our Patients'" section of the website that uses facilities provided by "Rare Connect" to translate message exchanges in |
| eight European languages. |
| 2) Providing support for communication and tissue acquisition to the European Multidisciplinary Initiative on |
| Neuroacanthocytosis and the related research at Dresden, Verona, Oxford, Nijmegen and Michigan universities as well |
| as for the on-going McLeod syndrome research project at the Harvard Medical School. |
| 3) Promoting new scientific research. Close collaboration has been developed by laboratories into probing the |
| findings of investigators in Dresden and Verona. The Advocacy will make future provision in its research grant |
| conditions to continue to encourage collaboration between researchers in the field. |
| 4) Providing more support to the free diagnostic service in Munich and the expansion of the international patient |
| REGISTRY. |
| 5) During the May 2016 Symposium in the US there was a discussion about how our services to patients and families |
| can become more useful. We have begun to build our base of contributors to the work of the Advocacy. It also afforded |
| the scientists an opportunity to meet patients first-hand which they will again do in Dresden. Patients and family |
| members will again hear the type of research work which is ongoing and the Advocacy is supporting through research |
| grants. |
| STRUCTURE, GOVERNANCE AND MANAGEMENT |
| Governing document |
| The charity is controlled by its governing document, Articles and Memorandum of Association, and constitutes a |
| limited company, limited by guarantee as defined by the Companies Act 2006 |
| Recruitment and appointment of new trustees |
| New trustees are elected solely by the present trustees and all trustees will be subject to limited terms of office. |
| The trustees meet quarterly in a formal meeting with an agenda set out in advance. Trustees and officers are |
| volunteers. There is no salaried staff. |
| REFERENCE AND ADMINISTRATIVE DETAILS |
| Registered Company number |
| Registered Charity number |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Report of the Trustees |
| for the Year Ended 31 August 2017 |
| REFERENCE AND ADMINISTRATIVE DETAILS |
| Registered office |
| Trustees |
| - resigned 31.5.17 |
| Director | - appointed 13.9.17 |
| Director | - appointed 13.9.17 |
| Company Secretary |
| Independent examiner |
| Orcadia |
| Chartered Accountants |
| Kirkwall |
| Orkney |
| KW15 1HZ |
| Approved by order of the board of trustees on |
| Independent Examiner's Report to the Trustees of |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Independent examiner's report to the trustees of Advocacy For Neuroacanthocytosis Patients ('the Company') |
| I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 August 2017. |
| Responsibilities and basis of report |
| As the charity's trustees of the Company (and also its directors for the purposes of company law) you 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 as 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 examiner's 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: |
| 1. | accounting records were not kept in respect of the Company as required by section 386 of the 2006 Act; or |
| 2. | the accounts do not accord with those records; or |
| 3. | the accounts do not comply with the accounting 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 |
| 4. | 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 |
| Doris Hutchison |
| ATT, CA |
| Orcadia |
| Chartered Accountants |
| Date: ............................................. |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Statement of Financial Activities |
| for the Year Ended 31 August 2017 |
| 2017 | 2016 |
| Unrestricted funds |
Restricted funds |
Total funds |
Total funds |
| Notes | £ | £ | £ | £ |
| INCOME AND ENDOWMENTS FROM |
| Donations and legacies |
| Other trading activities | 2 |
| Total |
| EXPENDITURE ON |
| Charitable activities |
| Other |
| Total |
| NET INCOME/(EXPENDITURE) | ( |
) | ( |
) | ( |
) |
| RECONCILIATION OF FUNDS |
| Total funds brought forward |
| TOTAL FUNDS CARRIED FORWARD | 61,364 |
| CONTINUING OPERATIONS |
| All income and expenditure has arisen from continuing activities. |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Balance Sheet |
| At 31 August 2017 |
| 2017 | 2016 |
| Unrestricted funds |
Restricted funds |
Total funds |
Total funds |
| Notes | £ | £ | £ | £ |
| CURRENT ASSETS |
| Cash at bank |
| CREDITORS |
| Amounts falling due within one year | 5 | ( |
) | ( |
) | ( |
) |
| NET CURRENT ASSETS |
| TOTAL ASSETS LESS CURRENT LIABILITIES |
| NET ASSETS |
| FUNDS | 6 |
| Unrestricted funds | 31,637 | 60,714 |
| Restricted funds | 650 |
| TOTAL FUNDS | 61,364 |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Balance Sheet - continued |
| At 31 August 2017 |
| The charitable company is entitled to exemption from audit under |
| Section 477 of the Companies Act 2006 for the year ended 31 August 2017. |
| The members have not required the company to obtain an audit of its financial statements for the year ended |
| 31 August 2017 in accordance with Section 476 of the Companies Act 2006. |
| The trustees acknowledge their responsibilities for |
| (a) | ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 2006 and |
| (b) | preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of each financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the charitable company. |
| These financial statements have been prepared in accordance with the |
| special provisions of Part 15 of the Companies Act 2006 relating to |
| charitable small companies. |
| The financial statements were approved by the Board of Trustees on |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Notes to the Financial Statements |
| for the Year Ended 31 August 2017 |
| 1. | ACCOUNTING POLICIES |
| Basis of preparing the financial statements |
| The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been |
| prepared 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' and the Companies Act 2006. The financial statements have been prepared under the historical cost |
| convention. |
| Income |
| All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, |
| it is probable that the income will be received and the amount can be measured reliably. |
| Expenditure |
| Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the |
| charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and |
| the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and |
| has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly |
| attributed to particular headings they have been allocated to activities on a basis consistent with the use of |
| resources. |
| The company makes quarterly payments against the expenses invoices of grant recipients. £46,386 was paid to |
| grant and symposium recipients during the year by the Advocacy of Neuroacanthocytosis Patients. |
| Taxation |
| The charity is exempt from corporation tax on its charitable activities. |
| Fund accounting |
| Designated Funds are held in anticipation of requests for financial support of active research projects approved |
| by the Board. The conditions of any grant allowed for an unconditional termination, however, the board feels a |
| moral obligation after such grants have begun. |
| At 31 August 2017, there were no active research grants provided for as Designated Funds. |
| 2. | OTHER TRADING ACTIVITIES |
| 2017 | 2016 |
| £ | £ |
| Fundraising events |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Notes to the Financial Statements - continued |
| for the Year Ended 31 August 2017 |
| 3. | TRUSTEES' REMUNERATION AND BENEFITS |
| There were no trustees' remuneration or other benefits for the year ended 31 August 2017 nor for the year ended |
| 31 August 2016. |
| Trustees' expenses |
| There were no trustees' expenses paid for the year ended 31 August 2017 nor for the year ended |
| 31 August 2016. |
| 4. | COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES |
| Unrestricted funds |
Restricted funds |
Total funds |
| £ | £ | £ |
| INCOME AND ENDOWMENTS FROM |
| Donations and legacies |
| Other trading activities |
| Total |
| EXPENDITURE ON |
| Charitable activities |
| Other |
| Total |
| NET INCOME/(EXPENDITURE) | ( |
) | ( |
) |
| RECONCILIATION OF FUNDS |
| Total funds brought forward | 104,735 | 650 | 105,385 |
| TOTAL FUNDS CARRIED FORWARD | 60,714 | 650 | 61,364 |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Notes to the Financial Statements - continued |
| for the Year Ended 31 August 2017 |
| 5. | CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR |
| 2017 | 2016 |
| £ | £ |
| Other creditors |
| 6. | MOVEMENT IN FUNDS |
At 1.9.16 |
Net movement in funds |
At 31.8.17 |
| £ | £ | £ |
| Unrestricted funds |
| Undesignated Funds | 60,714 | (29,077 | ) | 31,637 |
| Restricted funds |
| Harvard Donation | 650 | - | 650 |
| TOTAL FUNDS | (29,077 | ) | 32,287 |
| Net movement in funds, included in the above are as follows: |
| Incoming resources |
Resources expended |
Movement in funds |
| £ | £ | £ |
| Unrestricted funds |
| Undesignated Funds | 18,600 | (47,677 | ) | (29,077 | ) |
| TOTAL FUNDS | ( |
) | (29,077 | ) |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Notes to the Financial Statements - continued |
| for the Year Ended 31 August 2017 |
| 6. | MOVEMENT IN FUNDS - continued |
| Comparatives for movement in funds |
At 1.9.15 |
Net movement in funds |
At 31.8.16 |
| £ | £ | £ |
| Unrestricted Funds |
| General fund | - | (600 | ) | (600 | ) |
| Undesignated Funds | 104,735 | (43,421 | ) | 61,314 |
| 104,735 | (44,021 | ) | 60,714 |
| Restricted Funds |
| Harvard Donation | 650 | - | 650 |
| TOTAL FUNDS | 105,385 | (44,021 | ) | 61,364 |
| Comparative net movement in funds, included in the above are as follows: |
| Incoming resources |
Resources expended |
Movement in funds |
| £ | £ | £ |
| Unrestricted funds |
| Undesignated Funds | 19,151 | (62,572 | ) | (43,421 | ) |
| General fund | - | (600 | ) | (600 | ) |
| 19,151 | (63,172 | ) | (44,021 | ) |
| TOTAL FUNDS | 19,151 | (63,172 | ) | (44,021 | ) |
| 7. | RELATED PARTY DISCLOSURES |
| There were no related party transactions for the year ended 31 August 2017. |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Reconciliation of Income and Expenditure |
| for the Year Ended 31 August 2016 |
UK GAAP |
Effect of transition to FRS 102 |
FRS 102 |
| Notes | £ | £ | £ |
| INCOME AND ENDOWMENTS FROM |
| Donations and legacies | 15,411 | 15,411 |
| Other trading activities | 3,740 | 3,740 |
| Total | 19,151 | 19,151 |
| EXPENDITURE ON |
| Charitable activities | 61,719 | 61,719 |
| OBSOLETE Governance costs | 600 | (600 | ) | - |
| Other | 853 | 1,453 |
| Total | 63,172 | 63,172 |
| NET INCOME/(EXPENDITURE) | (44,021 | ) | (44,021 | ) |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Reconciliation of Funds |
| At 1 September 2015 |
| (Date of Transition to FRS 102) |
UK GAAP |
Effect of transition to FRS 102 |
FRS 102 |
| Notes | £ | £ | £ |
| - | - | - |
| CURRENT ASSETS |
| Cash at bank | 105,385 | 105,385 |
| NET CURRENT ASSETS | 105,385 | 105,385 |
| TOTAL ASSETS LESS CURRENT LIABILITIES | 105,385 | 105,385 |
| 105,385 | 105,385 |
| FUNDS |
| Unrestricted funds | 104,735 | - | 104,735 |
| Restricted funds | 650 | - | 650 |
| TOTAL FUNDS | 105,385 | - | 105,385 |
| Advocacy For Neuroacanthocytosis |
| Patients |
| Reconciliation of Funds |
| At 31 August 2016 |
UK GAAP |
Effect of transition to FRS 102 |
FRS 102 |
| Notes | £ | £ | £ |
| CURRENT ASSETS |
| Cash at bank | 61,964 | 61,964 |
| CREDITORS |
| Amounts falling due within one year | (600 | ) | (600 | ) |
| NET CURRENT ASSETS | 61,364 | 61,364 |
| TOTAL ASSETS LESS CURRENT LIABILITIES | 61,364 | 61,364 |
| NET ASSETS | 61,364 | 61,364 |
| FUNDS |
| Unrestricted funds | 60,714 | - | 60,714 |
| Restricted funds | 650 | - | 650 |
| TOTAL FUNDS | 61,364 | - | 61,364 |