This is a working draft document
## Trustees’ Annual Report for the period: April 2023- March 2024
Charity name: ALK+ International
Charity registration number: 1199634
Objectives and Activities: To protect the lives and promote the health of the public through supporting research into nature, diagnosis, prevention and cure and advocating to improve the life expectancy of patients with Anaplastic Lymphoma Kinase Positive (ALK+) cancer. As trustees, we do this by;
1. Keeping abreast of trials, breakthroughs and technologies in the oncology industry worldwide, we will advocate for patients and help accelerate the introduction of lifesaving ALK-positive cancer advances. Whereby we can make criteria-driven trustee decisions on the best research programmes to help fund.
2 Awarding research grants which fulfil the criteria in our Grant Policy and a completed grant application.
3. Advocating for improvements to treatment and clinical trial availability by liaising with government, pharmaceutical companies, regulatory bodies and other organisations.
4. Embedding ourselves into relevant organisations, we will effect change among decision-makers using our knowledge and experience of ALK-positive cancers.
5. Working with other charities and organisations to create campaigns for raising awareness and identifying new patients who may need information and support.
6. Providing resources such as a website and social media support groups. Whereby, we will be connecting patients and educating the wider general public, keeping them informed of the most up-to-date developments on the advancement of treatments and research.
7. Fundraising for the above.
Summary of the purposes of the charity as set out in its governing document:
To relieve the sickness and to preserve and protect the good health of patients with Anaplastic Lymphoma Kinase Positive (ALK+) cancer in particular, but not exclusively, by:
a. Awarding grants for research into the nature, diagnosis, prevention and cure for ALK-positive cancer, the useful results of which will be published.
- b. Working with other charities and organisations to create campaigns that will raise public awareness of ALKpositive cancer;
c. Advocating for improvements to treatment and clinical trial availability, by liaising with government, pharmaceutical companies, regulatory bodies and other organisations;
d. Identifying and locating ALK-positive patients and offering them information and support;
e. The provision of resources such as a website and social media support groups that will connect patients educate the general public and keep them informed of the most up-to-date developments on the advancement of treatments and research, and;
f. Raising funds for the above purposes.
Registered Charity Number: 1199634 Page:1
Summary of the main activities about those purposes for the public benefit, in particular, the activities, projects or services identified in the accounts.
1. This year the trustees have been working hard to secure a worthwhile research project to invest in. We have been working closely with the Institute of Cancer Research, and we are confident that the project we have chosen to invest in to further ALK+ research is a worthwhile one. This has been confirmed by our research advisory board, which consists of ALK+ experts in their field.
2. We have continued to keep up to date with clinical trials and general ALK+ research within the ALK+ community. There are many ways in which the trustees keep up to date with these breakthroughs and technologies including but not limited to keeping up to date with pharmaceutical companies, organisations and relevant experts in their field, remote meetings, attending conferences, networking with other like-minded organisations, following those relevant people on social media. We were lucky enough to be invited to join LUCE (Lung Cancer Europe) this year and some trustees also attended various conferences such as BTOG.
3. The trustees have continued to form affiliations with relevant cancer research organisations. Institute for Cancer Research, British Thoracic Oncology Group (BTOG), ALK Positive Inc. (USA based), LUCE (Lung Cancer Europe), Every Breath Lung Cancer Support Group, The Ruth Straus Foundation, Charities Aid Foundation, The Charity Excellence Framework and Liberating Research to name a few.
ALK+ International provides a useful links page on our website (www.alkinternational.org/usefullinks) that directs ALK-positive patients to further supportive charities: Roy Castle Lung Cancer Foundation, Children with Cancer UK, NCRI, Mind, Willow, Treatment Bag, Cancer Support UK, The Bike Network, The Fitness Support Network, Something to Look Forward To, and the Chris Aked foundation.
ALK+ International has also added the following fundraising platforms to further extend our fundraising reach:
Buy to give, Give As You Live, Easy Fundraising, PayPal, JustGiving and Meta.
4. ALK+ International has continued to affect change by expanding our support groups into two main fields of interest; the first being to focus on sharing research papers and petitions with both the ALK+ and wider public to educate and raise awareness of ALK+ cancer. The second is to expand our fundraising channels by creating a dedicated raffle page to ensure we stay relevant on social media whilst not compromising our current main social media pages.
5. This year's Lung Cancer Awareness Month social media campaign (November 2023), saw ALK+ International ask hundreds of patients, caregivers and supporters to come together and tell us what research means to them. This powerful social media campaign spread across all social media platforms including Facebook, Instagram, X and LinkedIn. Some of the patients that appeared in the video clips also appeared on the BBC news highlighting the importance of research into rare cancers. The message was clear - research means everything to those living with ALK+ cancer. If we work together, we can make a real difference and fund vital medical research into ALK+ cancer.
In November 2023, we also saw two trustees step down from their roles.
6. Trustees have created and subsidised resources such as a website and various social media platforms (www.alkinternational.org /Facebook/Instagram/X/LinkedIn/YouTube) where we have been able to connect patients and educate the wider general public about rare ALK-positive cancers, keeping them informed of the most up-to-date developments on the advancement of treatments and research.
7. The following fundraisers took place this year between April 2023 and March 2024;
Registered Charity Number: 1199634 Page:
- Jamie Matthews 4x4x48 challenge. In tribute to Alix Bernard. Jamie ran four miles every four hours for forty-eight hours over what would have been Alix's 30th birthday and raised over £40,000.
- Petts Wood Dads held a charity football match and family fun day which included an online raffle which raised over £4000.
- Coffee Morning at the Hextable Heritage Centre, led by Margaret Gibbard, raised over £800. The day included Robin's hat shop, a raffle and a bookstall.
- Football card raffle led by the founder of the charity, Joanna Jonathan, raised over £300 and proved a popular weekly event.
- Linda Arnold's charity evenings continue to raise over £400 per event.
- Two additional legacies this year were Mark Turner and Brian West.
## Social Media
We have continued to grow our social media following by firstly introducing 'Fact Friday' posts on Instagram and Facebook explaining in layman's terms "what is ALK?" & "What is a liquid biopsy" etc. The trustees together built and paid privately to host a website (www.alkinternational.org) and started an ALK stories page showcasing that anyone can be diagnosed with ALK-positive cancers regardless of age, gender or any other defining factor. To date, there are 14 ALK patient stories on the website, including a neuroblastoma patient and a bowel cancer patient,t, which ties in with our 'all ALK cancers' ethos.
Alk_international Instagram followers: 1703
https://www.facebook.com/alkinternational Facebook page: 757 Facebook support group:545
(@ALKpositiveInt) Twitter followers: 957
https://youtube.com/@alkinternational YouTube views:357
- https://www.linkedin.com/company/alk international/ LinkedIn followers:1569
A statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit
The trustees of ALK+ International have had regard to the guidance issued by the Charity Commission on public benefit as well as in the trust deed, the many policies and procedures installed to run the charity and role descriptions alike.
ALK+ International is part of the charity excellence framework and prides itself on keeping as up-to-date as possible with charity law as well as taking opportunities to learn more, attend courses, etc. Each trustee had also completed a DBS check.
## Research Grant Criteria Policy
ALK+ International will only assign grants to medical researchers or organisations affiliated with medical researchers in the field of ALK-positive cancers to further extend the lives of ALK-positive cancer patients. ALK+ International uses the following criteria to select individuals or organisations for grants.
All or some may apply depending on the individual circumstance that will be determined by a unanimous decision by the Trustees and under the advice of the Patient Advisory Board.
The proposed research benefits all ALK-positive cancer patients, not just those of a particular type (eg. ALKpositive lung cancer). We believe anyone with an ALK-positive Cancer should be included and not just the most common. Many are overlooked including but not limited to ALK Kidney, ALK Breast and ALK Lymphoma.
Registered Charity Number: 1199634 Page:
The Trustees will make an assessment of the proposed research project's maturity or expected time to reach a clinical setting. This will be carried out by extensive research of the proposed research project. Research projects will submit an initial research grant application form and then the trustees will hold subsequent interviews for successful projects.
An assessment of the viability of the researcher or research organisation to produce a successful research project. Trustees will carry out due diligence and background checks, if necessary, to assess the viability of the researchers within the projects proposed.
Trustees will consider the infrastructure and other resources that are or may be available to the researchers and their proposed projects, as well as the researcher's competence, experience and background.
To assess the feasibility of a research project providing a clinical benefit to ALK+ cancer patients. This will include but not be limited to risk assessment and solutions, control efficiency, timeline and estimations and resources available. Trustees may also consider economic, technical, scheduling and operational feasibility in this instance.
The methodology proposed is scientifically sound. This will include but not be limited to the above about feasibility but also apply to the methodology in which the proposed research will commence.
Any ethical or legal considerations, such as the Human Rights Act, should be carefully considered when looking at a proposed research application.
The proposed cost for the research project, how viable our grant participation would be, and if other organisations/charities would likely be awarding or investing in the proposed research project if such information is easily discernible.
In addition, the individual researcher or proposed research project would be subject to an assessment by Trustees to validate their business and its appropriateness about the charity. Background checks may be carried out at the discretion of the Trustees and or upon the advice of the Patient Advisory Board.
In addition to the medical criteria above, the Trustees will ensure the proposed project is well understood by all, particularly:
What will be delivered and how,
- What exactly is the project
- How easy will it be to monitor its delivery
- Whether the proposed researcher or research project can deliver what is required
- If the proposed researchers or project has the capability and capacity to deliver
- If the proposed researchers can efficiently adhere to a time frame.
- The individual researcher's expertise and skills in this specific area - what history and track record do they personally and professionally have? A CV or something of equal calibre will be required.
- Whether the individual researcher or employee within the proposed research project has the management and technical capability and capacity to undertake this project along with its existing commitments.
- The cost of the project, what ALK+ International’s funds will go towards and how it is going to be used. An itemised breakdown and or budget may be requested at this point.
## Contribution made by volunteers
Volunteer contributions in the years 2023/24 were exclusively through fundraising and the running of personal fundraising events through Kindlink or JustGiving. We had 15 volunteers in total hosting a wide range of events, and we are so grateful to them for their continued support.
Risk assessments/ public liability insurance was taken into consideration within the locations of events by property owners externally and ALK+ International had no matters arising regarding this.
## Research project
Registered Charity Number: 1199634 Page:
Throughout the 2023/2024 year, the trustees investigated and assessed cancer research projects in the UK. After a thorough investigation and consideration of the grant criteria, the trustees voted to invest £48,746.20 in a research project proposed by The Institute of Cancer Research (ICR) and The Royal Marsden NHS Foundation Trust. Over the next two to three years, Dr Huang from the ICR will collect and prepare lung tumour samples from Professor Popat’s clinic at the Royal Marsden for a molecular-based study of ALK+ patients. This funding will provide a structured framework within which both tissue and blood specimens can be collected from patients for analyses, allowing us to identify new tests as well as characterise how the tumours become resistant to targeted therapies. The ICR then hope to carry out experiments that underpin and drive the knowledge needed for Dr Huang and Professor Popat to reach their ultimate goal: to deliver an individualised approach to treatment and improve the long-term outcomes in ALK+ lung cancer patients, and beyond, who currently have a poor prognosis. The trustees were fully convinced that this research project meets our criteria, and establishes a base for further collaborative ALK-positive research projects in the UK.
## Green policy
This year saw the charity implement our green policy; the trustees are mindful of our impact on the planet and have made the conscious decision not to travel where possible; this not only keeps costs down for the trustees but also doesn't negatively impact the planet. Meetings with ALK+ International are held remotely where possible and travel should be done with careful consideration.
## Financial Review
## Review of the charity’s financial position at the end of the period
Money in: £55,870.37
Money out: £48,746.20
The trustees have chosen to externally sponsor certain administrative costs for the running of this financial year of the charity. Trustees also chose to subsidise their travel expenses while attending conferences; however, as per the above-mentioned new green policy, in future, we will be mindful of our impact on the planet and will in future choose to participate in networking and conferences remotely where possible.
There are no reserves held for ALK+ International. The reason for this is that we currently have zero overheads and, in the future, intend to access grants to expand our core administration costs. To date, we have been unsuccessful in securing core funding, and therefore, the trustees are still subsidising the running costs of the charity's website. The trustees aim to acquire core funding in the future and hold firm that '100% of funds raised will go towards ALK+ research'.
In this financial year, 23/24, we are proud to have set up payroll giving. We have also increased the number of monthly donors through both our bank account and our charity-focused fundraising platform, Kindlink. Social media donations have also increased. Regular donations are now easily made via various social media platforms. Easy fundraising, give as you live, buy to give.. also increased the scope for ALK+ International to fundraise further using these platforms.
This year, as with last year, the charity's principal sources of funds have come solely from fundraising from the public.
## ALK+ International is constituted with a trust deed.
## Methods of trustee selection include but are not limited to:
- Being an invested part of the ALK-positive community
- Having a firm belief that research will extend the lives of ALK+ cancer patients
- Can bring something to our trustee group that will help to forward the charity. IE; fundraising/media backgrounds.
Registered Charity Number: 1199634 Page:
- Trustees must unanimously agree to appoint new trustees and uphold the values set out in our objectives and activities.
## Reference and Administrative details
Charity name: ALK+ International
Another name the charity uses: is ALK International Registered charity number: 1199634
Charity’s principal address has been changed this year from
4 PEEL STREET
HASLINGDEN
ROSSENDALE
BB4 5DZ
To
21 Northfield
Hartley
Kent
DA37EW
Names of the charity trustees who manage the charity
1. Joanna Jonathan
2. James Gibbard
3. Catherine Gibbard
4. Caroline Goddard
All trustees work remotely from their homes throughout the UK negating the need for travel expenses, office space & public liability insurance. No trustees hold property belonging to the charity. Similarly, no funds or assets are held as custodian trustees.
## Additional Information
A medical committee has now been formalised and consists of 4 highly prominent figures in the ALK oncology field and they will be announced in due course.
## Declarations
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Full name(s)
Joanna Jonathan - Founder
Catherine Gibbard -Founder
James Gibbard - Founder
Registered Charity Number: 1199634 Page:
Caroline Goddard - Trustee
Date: 5th November 2024
Registered Charity Number: 1199634 Page:
## **ALK+ International**
Financial Statements for the period ended 31 March 2024
Registered Charity Number: 1199634
## **ALK+ International**
**Contents of the Financial Statements For the Period Ended 31 March 2024**
||**Page**|
|---|---|
|**Statement of Financial Activities**|**1**|
|**Balance Sheet**|**2**|
|**Noted to the Financial Statements**|**3 - 4**|
|**Detailed Statement of Financial Activities**|**5**|
## **ALK+ International**
## **Statement of Financial Activities For the Period Ended 31 March 2024**
|**INCOME AND ENDOWMENTS FROM**
Donations and legacies
**Total**
**EXPENDITURE ON**
Charitable activities
**Total**
**NET INCOME/(EXPENDITURE)**
**RECONCILIATION OF FUNDS**
Total funds brought forward
**TOTAL FUNDS CARRIED FORWARD**|**Unrestricted**
**Restricted**
**Funds**
**Funds**
**£**
**£**
55,870
-
**55,870**
**-**
46,746
-
**46,746**
**-**
**9,124**
**-**
59,202
-
**66,326**
**-**|**Total**
**Funds**
**£**
55,870
**55,870**
46,746
**46,746**
**9,124**
59,202
**66,326**|**Prior Year**
**Funds**
**£**
59,202
**59,202**
-
**-**
**59,202**
-
**59,202**|
|---|---|---|---|
Page 1
## **ALK+ International**
## **Balance Sheet For the Period Ended 31 March 2024**
|**FIXED ASSETS**
Tangible assets
**CURRENT ASSETS**
Cash at bank and in hand
**CREDITORS**
Amounts falling due within one year
**NET CURRENT ASSETS**
**TOTAL ASSETS LESS CURRENT**
**LIABILITIES**
**NET ASSETS**
**FUNDS**
Unrestricted funds
Restricted funds
**TOTAL FUNDS**|**Unrestricted**
**Restricted**
**Funds**
**Funds**
**£**
**£**
-
-
66,326
-
-
-
**66,326**
**-**
**66,326**
**-**
**66,326**
**-**|**Total**
**Funds**
**£**
-
66,326
-
**66,326**
**66,326**
**66,326**
66,326
-
**66,326**|**Prior Year**
**Funds**
**£**
-
59,202
-
**59,202**
**59,202**
**59,202**
59,202
-
**59,202**|
|---|---|---|---|
The financial statements were approved by the Board of Trustees and authorised for issue on 29 November and were signed on its behalf by:
J Jonathan – Trustee
Page 2
**Notes to the Financial Statements For the Period Ended 31 March 2024**
## **ALK+ International**
## **1. ACCOUNTING POLICIES**
## **Basis of preparing the financial statements**
The Trustees have chosen to adopt Update Bulletin 1 issued by the Charities Commission in February 2016, which exempts the charity from the need to prepare a statement of cash flows.
The board of trustees have considered the charities going concern position for a period which extends beyond 12 months from the date of approval of the financial statements.
## **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.
## **Taxation**
The charity is exempt from tax on its charitable activities.
## **Fund accounting**
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.
Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.
## **2. DONATIONS AND LEGACIES**
|**DONATIONS AND LEGACIES**|||
|---|---|---|
||**2024**|**2023**|
||£|£|
|Donations|55,870|59,202|
## **3. TRUSTEES’ REMUNERATION AND BENEFITS**
There were no trustees’ remuneration of benefits for the period ended 31 March 2024.
## **Trustees’ expenses**
There were no trustees’ expenses paid for the period ended 31 March 2024.
Page 3
## **ALK+ International**
## **Notes to the Financial Statements For the Period Ended 31 March 2024**
**4. STAFF COSTS**
The average monthly number of employees during the year was as follows:
|Staff
No employees received emoluments in excess of £60,000.
**5.**
**MOVEMENT IN FUNDS**
At 01.04.2023
£
**Unrestricted funds**
General fund
59,202
**Restricted funds**
Restricted funds
-
**TOTAL FUNDS**
**59,202**
At 01.04.2022
£
**Unrestricted funds**
General fund
-
**Restricted funds**
Restricted funds
-
**TOTAL FUNDS**
**-**|**2024**
Nil
Net
movement
in funds
£
9,124
-
**-**
Net
movement
in funds
£
59,202
-
**59,202**|**2023**
Nil
At
31.03.2024
£
66,326
-
**66,326**
At
31.03.2023
£
59,202
-
**59,202**|
|---|---|---|
**6. RELATED PARTY DISCLOSURES**
There were no related party transactions for the year ended 31 March 2024 or 31 March 2023.
Page 4
## **ALK+ International**
## **Notes to the Financial Statements For the Period Ended 31 March 2024**
|**INCOME AND ENDOWMENTS**
**Donations and legacies**
Donations
**Total incoming resources**
**EXPENDITURE**
Grant provided
**Total resources expended**
**NET INCOME**|**2024**
£
55,870
**55,870**
48,746
**48,746**
**9,124**|**2023**
£
59,202|
|---|---|---|
|||
**59,202**|
|||-
**-**
**59,202**|
Page 5
**Independent Examiner's Report to the Trustees of ALK+ International**
## **Independent examiner's report to the trustees of ALK+ International**
I report to the charity trustees on my examination of the accounts of ALK+ International for the period ended 31 March 2024.
## **Responsibilities and basis of report**
As the charity trustees you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the Act').
I report in respect of my examination of the accounts carried out under Section 145 of the Act and in carrying out my examination I have followed all applicable Directions given by the Charity Commission under Section 145(5)(b) of the Act.
## **Independent examiner's statement**
I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
1. accounting records were not kept in respect of the Trust as required by Section 130 of the Act; or 2. the accounts do not accord with those records; or
3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 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.
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.
Nicola Lewis BFP ACA FMAAT
Date: 10/12/2024