Gorlin Syndrome Group
Trustees report
Charity Commission number 1197282
Period under review: 1[st] April 2023 until 31[st] March 2024
Registered office: 44 Gatley Road, Cheadle, Greater Manchester SK8 1QE. Registered Charity Number 1197282
Trustees report for the period 1st April 2023 until 31[st] March 2024
The trustees present their report together with the financial statements for the charity for the period 1[st] April 2023 until 31[st] March 2024
The financial statements have been prepared in accordance with accounting policies as set out by charity law and are based on a receipts and payments format adopted by the trustees.
1. Structure, Governance and Management
Governing Document
The charity was granted CIO (Charity Incorporated Organisation) status by the Charity Commission, England and Wales on the 22[nd] of December 2021.
This report covers the period from the 1[st] April 2023 until the period end date of the 31[st] March 2024, a total of 365 days. The end date is in line with previous year end dates for the charity.
The charity is administered by the executive committee comprising the chair, treasurer, secretary and five additional trustees.
Executive committee members usually hold office for 3 years but may be re-appointed for a further term(s) that may be for less than 3 years.
The Committee shall hold at least 2 ordinary executive meetings each calendar year, which are quorate if at least 3 of its members are present, and minutes will be kept.
Executive meetings held:
In the period (NB. 365 days) 1[st] April 2023 until 31[st] of March 2024, a total of 6 ordinary executive meetings were held. All of which were quorate.
Recruitment and appointment of new trustees
The Group have a written policy pertaining to the recruitment and re-election of trustees. An annual review of the roles and responsibilities of trustees is undertaken to ensure a fair distribution of the work of the charity. This policy underlines the principle of equal opportunity within an open and efficient process of recruiting, retaining, and supervising a diverse Executive Committee.
To become a trustee, applicants are required to complete an application form including a declaration of eligibility. Following this stage, suitable applicants are invited to meet the trustees so that they can be further assessed and fully informed about the role and in turn ask questions of the trustees. All successful applicants are contacted within 48 hours and personal referees contacted.
New trustees are formally appointed at the next AGM or EGM and provided with an induction pack and training program based on individual need.
Six trustees currently form the executive committee:
Vicky Gill, Chair Andrew Gill, Treasurer Martin Hill Stephen Morton, Secretary Andrew Wilkinson Howard Tyers
Risk management:
The trustees identify and record internal and external risks envisaged in any action, situation, or program of activities. After due consideration, action will be taken to avoid or minimise the risk. This includes not proceeding with a program. Where a risk has been identified but the benefits to Gorlin Syndrome Group or its beneficiaries are deemed worthwhile, then transfer of risk through outsourcing, insurance or other constitutional action is considered.
2. Objects:
The Gorlin Syndrome Group objects are:
-
a. The relief of sickness and the protection and preservation of the health of persons affected by Gorlin syndrome and any related conditions. This includes their families and carers but not restricted to.
-
b. The advancement of the education of the medical profession and the general public into Gorlin syndrome and its implications for the family.
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c. The promotion of research into the causes, effects, treatment and management of Gorlin syndrome and to disseminate the useful results thereof.
3. Public Benefit:
The Trustees have reviewed the activities for the year to ensure they remain focused on the group's stated aims and objects and continue to deliver benefits to the public. The Trustees are satisfied that the charity's activities provide a wide public benefit.
4. Achievement and Performance:
Chair’s report – Vicky Gill
This report covers a period of time (365 days) from 1[st] April 2023 until the year end on the 31[st ] of March 2024.
I am pleased to share some exciting updates from The Gorlin Syndrome Group as we reflect on another successful year, marked by significant milestones and collective achievements. The highlight of our year was undoubtedly the Annual Conference held at Crewe Hall in June. Feedback from attendees has been overwhelmingly positive, with many expressing gratitude for the opportunity to connect, share experiences, and discuss the challenges faced by those living with Gorlin Syndrome. Our medical advisers were present to provide invaluable insights into scientific developments and reassurance that the needs of our community remain a priority.
This year also saw remarkable fundraising efforts spearheaded by Andrew Gill’s parachute jump, which raised an impressive £1,500. This success was complemented by various other initiatives, including birthday parties and generous donations from our supporters.
On a lighter note, we are thrilled to announce that one of our Trustees, Howard, has taken on the role of fashion designer! He is currently working on exciting new T-shirt designs that will not only promote The Gorlin Syndrome Group but also raise awareness about Gorlin syndrome itself.
In our commitment to providing resources for those newly diagnosed or seeking information
about Gorlin syndrome, we have designed and published informative leaflets. These materials aim to assist individuals during appointments and help them communicate effectively with their families.
Our collaborative efforts with organizations such as the Gorlin Syndrome Alliance in the USA continue to grow. We believe these connections will enhance our ability to raise awareness within both the medical profession and the wider public over time.
While we faced challenges with Palvella Therapeutics regarding a drug trial that did not progress beyond its second stage, we remain optimistic about ongoing projects. Notably, the Ultra-Violet Monitor Trial supported by a previous financial contribution of £5,000 is making strides under Professor Gareth Evans at Manchester University NHS Foundation Trust. A successful outcome could significantly benefit those diagnosed with Gorlin syndrome. Social media remains a vital communication tool for us; our Facebook support group now boasts over 1,300 active users. Additionally, we have relaunched our website as part of ongoing efforts to improve how we connect with our community.
The executive committee continues its diligent work in setting and reviewing short-, medium-, and long-term goals for the organisation. I am deeply appreciative of the passion and commitment demonstrated by each Trustee over this past year as we realign our focus and move forward together.
The Gorlin Syndrome Group thrives thanks to the dedication of our volunteers—Trustees and Ambassadors—who selflessly contribute their time each year. Their unwavering support enables us to continue offering essential assistance and raising awareness about Gorlin syndrome. We are delighted to welcome new members this year who bring additional skills and perspectives that strengthen our community.
We are excited about developing roles for patient ambassadors who will help us engage more effectively with the Gorlin community by sharing authentic stories from individuals living with this condition, as we strive towards enhancing awareness and providing valuable resources for those affected by Gorlin syndrome.
Lastly, I would like to extend my heartfelt thanks to our esteemed medical advisors: Professor Gareth Evans, Catherine Harwood, Dr. John Lear, Dr. Kai-Ren Ong, Dr. Rakesh Anand, and Dr. Kate Fife for their unwavering support.
5. Financial review
Treasurer’s report- Andrew Gill
Financial position
In the last 365 days, the charity recorded an income of £7075 plus £380 in interest payments totaling £7455. Expenditure was £10758 creating a deficit for the year of £3303. The amount of £4653 for the GSG conference accounted for the bulk of the spending. At the period end the total in unrestricted funds (No 1 Account 16893 + No 2 Account 16235) was £33128.
The trustees are satisfied that the reserves held are sufficient to support the ongoing work of the charity as the UK moves out of the pandemic. There are sufficient funds at the signing of these accounts to enable the charity to pay suppliers on time for the foreseeable future.
Reserves and investment policy:
The trustees have resolved to maintain surplus funds on the deposit account whilst they further develop the strategic plan for the group, post pandemic. As normal activities resume the level and use of reserves will be reviewed.
Statement of Assets and Liabilities at 31 March 2024:
| Charity Name | Charity Name | Charity Name | Charity Name | Charity Name | Charity Name | Charity Name | No (if any) | No (if any) | No (if any) | No (if any) | |
|---|---|---|---|---|---|---|---|---|---|---|---|
| GORLIN SYNDROME GROUP | 1197282 | ||||||||||
| For the period from 01/04/2023 |
To 31/03/2024 |
||||||||||
| Section A Receipts and payments | |||||||||||
| Unrestricted funds |
Restricted funds |
Endowment Funds |
Total funds |
||||||||
| to the nearest £ | |||||||||||
| A1 Receipts | 380 6243 832 7455 - 7455 67 2848 1190 2000 4653 10758 |
- - - - - - - - - - - - - - - - |
- - - - - - - - - - - - - - - - |
||||||||
| Interest on deposit accounts | 380 | ||||||||||
| Donations | 6243 | ||||||||||
| Fees for charitable servies | 832 | ||||||||||
| Sub total (Gross income for AR) |
7455 | ||||||||||
| A2 Asset and investment sales | |||||||||||
| Sub total | - | ||||||||||
| Total receipts | 7455 | ||||||||||
| A3 Payments | |||||||||||
| Bank charges | 67 | - | - | 67 | |||||||
| Voluntary receipts | 2848 | - | - | 2848 | |||||||
| General running cost | 1190 | - | - | 1190 | |||||||
| Website update | 2000 | - | - | 2000 | |||||||
| Conference/away day | 4653 | - | - | 4653 | |||||||
| - | - | 4,999 | |||||||||
| Sub total | 10758 | - | - | 10758 | |||||||
| - 10758 - 3303 |
- - - |
- - - |
- 10758 - 3303 |
||||||||
| A4 Asset and investment purchases |
|||||||||||
| - | |||||||||||
| Totalpayments | 10758 | ||||||||||
| Net of receipts/(payments) | - 3303 | - | - | - 3303 |
| A5 Transfers between funds | - | - | - | - | |||
|---|---|---|---|---|---|---|---|
| A6 Cash funds last year end | 36431 | - | - | 36432 | |||
| Cash funds thisyear end | 33128 | - | - | 33128 |
Section B Statement of assets and liabilities at the end of the period
----- Start of picture text -----
Restricted
Unrestricted funds Endowment
funds funds
Categories
B1 Cash funds 33128 - -
Sum of two Bank Accounts
- - -
- - -
Total cash funds 33128 - -
(agree balances with receipts and payments
O.K.
account(s))
Unrestricted Restricted Endowment
funds funds funds
to the nearest £
B2 Other monetary assets
Fund to which Cost Current value
asset belongs (optional) (optional)
- - -
B3 Investment assets
Fund to which Cost Current value
asset belongs (optional) (optional)
- - -
B4 Assets retained for the
charity’s own use
Fund to which Amount due When due
liability relates (optional) (optional)
B5 Liabilities
Print Name Date of
Signed by one or two trustees on behalf
of all the trustees approval
----- End of picture text -----
Notes to the Accounts for the Year Ended 31 March 2024:
Accounting Policies
- a. These accounts have been prepared on a receipts and payments basis in accordance with the Charities Act 2011 and adopted by trustees.
b. Fund Accounting
- Unrestricted Funds can be used in accordance with the charitable objects at the discretion of the trustees
Restricted Funds arise when the use of a donation or legacy is stipulated by the donor or funds are raised for a specific purpose. All Restricted Funds are used within the objects of the charity.
| Donations and Legacies | 01/04/2023~31/03/24 |
|---|---|
| Enthuse Donors | 1288 |
| Just GivingDonors | 1868 |
| Other Donors | 3087 |
| Total | 6243 |
Restricted Funds NIL
Payments to trustees:
There are no known related party transactions and no remuneration or expenses paid to the trustees, apart from that described above.
Reference and administration details:
Registered charity number England and Wales: 1197282
Principal address: 43 Tor View, Tregadillett, Launceston, Cornwall, PL15 7HB
Website: www.gorlingroup.org
Contact:
Stephen Morton, trustee, and secretary 64 Albatross Avenue, Strood, Rochester, Kent, ME2 2XP
Telephone: 07835368526 Email: steve@gorlingroup.org
Trustees as of the 31st of March 2024:
| Vicky Gill | Chair, | ||
|---|---|---|---|
| Andrew Gill | Treasurer | ||
| Martin Hill | Trustee | ||
| Stephen Morton | Secretary | ||
| Andrew Williamson | Trustee | Appointed 2ndJune 2023 | 3-year term |
| Howard Tyers | Trustee | Appointed 23rdAugust 2023 | 3-year term |
Trustees resigned
John Dooher left on 10[th] July 2023 Samantha Severn joined on 2[nd] June 2023, but then left on 9[th] February 2024
Constitution:
CIO (Charity Incorporated Organisation) Foundation Model 22nd December 2021
Bank:
CAF Bank 25 Kings Hill Avenue Kings Hill West Malling Kent ME19 4JQ
Date approved by trustees:
Signed:
Andrew Gill, trustee, and treasurer:
Signed:
Stephen Morton, trustee, and secretary: