Empowerment | Advocacy | Research
ANNUAL REPORT Our first year of impact.
13 February 2024 to 5 April 2025
Oncogene Cancer Research Charity no. 1206988
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TABLE OF CONTENTS
| Co-founders’ letter | 03 |
|---|---|
| Snapshot highlights | 04 |
| Our mission | 05 |
| Who we are | 06 |
| FY24/25 Accomplishments | 07-08 |
| Collaborating with others | 09 |
| Fundraising and expenditures | 09 |
| Community stories | 10 |
| Structure, governance and management |
11 |
| Reference & details | 11 |
| Name of the charity trustees that managed the charity |
12 |
| Declarations | 12 |
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CO-FOUNDERS’ LETTER
Welcome to our first Trustees’ Report!
We set up Oncogene Cancer Research (OCR) in February 2024 because we saw first-hand that far too many people just don't get enough: enough time, enough information, enough support. We saw diagnoses missed, delayed or misunderstood, and a complicated system. Many people impacted are left searching for answers, expertise and hope in a space where research and understanding remain limited.
We founded the charity as patients and families driven by a core belief: Research saves lives. This work is personal. We understand the fear that follows a diagnosis, the resilience it demands, and the determination it can ignite. From the outset, our purpose has been clear: Help people live longer and live better by empowering patients with trusted information; ensure the patient voice is heard in research and clinical decision making, and accelerate progress through research, collaboration and innovation.
In our first financial year, we raised just under £59,000 with people who share our belief in the power of research. This support has laid the foundation for what comes next: our first research seed grants. This will be the beginning of a future shaped by hope, progress and possibility.
Real change does not happen in isolation. It happens when patients, families, researchers and clinicians work together, learning from one another and pushing for better outcomes. We welcome your support — whether through sharing your time, your expertise, your story or your resources — as we continue to build a charity driven by lived experience, collaboration and the belief that better outcomes are possible.
Yvonne Diaz Jan Clark
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SNAPSHOT HIGHLIGHTS
Established a strong foundation in our first year
Founded Raised just under Feb 600+ £59k members 2024 over our foundation financial year
Building strong connections with industry and researchers Over the financial year period
Advisory Board engagements to bring the patient voice to industry
Industry & patient conferences
Speaking engagements influencing research, industry and supporting patients
attended including BTOG, ASCO, WCLC & ESMO
First campaigns
Our cardiotoxicity series encouraged patients to ask about cardiovascular risk, and we partnered with YLCI & EGFR Resisters on a global LCAM24 campaign
Patient stories
Our Instagram carousels & patient stories became a hallmark of how we build and empower our community
Strong social following Connecting, informing & inspiring patients, care partners, along with the medical & research community
OUR MISSION
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To improve the life expectancy and quality of life of people living with oncogene-driven cancers
WHAT WE DO
Empower patients Education around shared decision making, demystifying research, resilience, community
Champion Accelerate advocacy research From self advocacy to Funding, informing and research advocacy advocating for clinical trials and research
Oncogene Cancer Research was created because people living with oncogene-driven lung cancers needed far more than what existed. Our aim is to improve the life expectancy and quality-of-life of people living with oncogene-driven cancers by empowering patients with trusted information, strengthening the patient voice in research and clinical decision making, and accelerating medical research. We collaborate across the global lung cancer community because none of this work can be done alone. Progress happens faster when patients, families, researchers, industry and patient groups help shape it.
Our first year has been about establishing a charity built on the lived experience, scientific curiosity, and the conviction that better outcomes are possible. Our origin is rooted in real people — their resilience, their advocacy, their will to transform what a diagnosis can mean. It is our community’s faces, their stories and their determination, that shaped the creation of Oncogene Cancer Research and that continues to guide every step we take.
Charity Commision registration number: 1206988
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WHO WE ARE
Our trustees
Yvonne Diaz Chair and Co-founder
Yvonne is a strategic communications professional with 30 years’ experience at global organisations. She’s a mother of twin teen sons and was diagnosed with ALK+ lung cancer in August 2021. She’s a Board Member of ALK Positive Inc and a member of Lung Cancer Europe. Yvonne is a patient rep in Cancer Grand Challenges’ Team CANCAN - a $25m research project, an IASLC STARS Guide and involved in various aspects of advocacy.
Jan Clark Secretary and CoFounder
Jan brings experience from one of the largest global medical tech companies focused on medical discovery and diagnostics. She is connected to ALK through one of her four daughters who was diagnosed aged 20. Jan frequently represents the care partner voice, attends major industry conferences and leads fundraising campaigns. She was previously a trustee at an ALK+ cancer charity.
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Helen Tankard
Trustee
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Helen had a long successful career in the medical devices industry, after initially working as a registered nurse in the US and UK. She’s has managed a three-year National Lottery funded project working across various sectors of the NHS, charities and local community groups. She is now a volunteer business consultant for a healthcare support agency in the Algarve, in Portugal where she lives with her husband. Helen was drawn to OCR through a family connection to oncogene cancer.
Our medical advisors
Professor Sanjay Popat and Professor Suzanne Turner are founding members of our Medical Advisory Board. They generously give their time, expertise and guidance to support our research strategy and medical goals, helping ensure our work is clinically informed, patient-focused and grounded in scientific excellence.
Medical patient panel, medical advisors & supporters
We are supported by patient advisors with medical and research backgrounds who generously donate their time and expertise, alongside a dedicated network of thoracic oncologists, surgeons, radiotherapists and other specialists who help guide our patient information and work. We are also backed by a wide community of dedicated patient advocates and supporters who contribute to our programmes and initiatives in many ways.
FY 24/25 accomplishments
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EMPOWERING PATIENTS & CARE PARTNERS
Empowering patients with vetted information and community stories of resilience, advocacy and hope.
In our foundation year, we established an informative website with a wide range of resources and tools. We also created a private community for our members and today have over 600 members.
To help inform, educate and inspire our cancer community and help them feel less alone while navigating a diagnosis, we introduced written patient stories on our website and social media. We also support patients with shared decision-making by providing medically-vetted educational materials on matters like biomarker testing, treatment options, cardiotoxicity, and others.
After the end of our first financial year, we expanded this work with the launch of the Patient Voices podcast - to help our community feel informed, empowered, and less alone. We’ve also introduced an educational series on surgery in the advanced setting.
CHAMPIONING ADVOCACY
Amplifying the patient voice in research, policy and access to treatment.
In this financial year, we participated in scientific meetings and industry advisory boards, ensuring lived experiences informed research and treatment priorities. We collaborated with advocacy groups, reviewed patient materials for research and pharmaceutical partners, served as research grant reviewers, and contributed to NICE health technology assessments to support patient access to innovative medicines in the UK. We attended and/or spoke at major scientific and industry conferences including BTOG, ASCO, IASLC WCLC and ESMO, as well as patient meetings such as Lung Cancer Europe, ALK Positive Inc and the LUNGevity Hope Summit; none of which were funded by the charity. Our co-founder Yvonne was selected for the IASLC STARS Scholars programme, which included funded attendance & training at IASLC WCLC in San Diego.
These activities strengthen our ability to influence policy, trial design and patient-centred care, and is supported by ongoing training through IASLC STARS, WECAN, the Research Advocacy Network and other publicly available programmes.
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ACCELERATING RESEARCH
Funding research to extend the lives of people living with oncogene-driven lung cancers.
Prior to formally establishing OCR, our co-founders supported nearly £100,000 in donations to fund the ground-breaking work of the Institute of Cancer Research.
Over this financial year, we have raised nearly £59,000, which will support two small seed grants to fund innovative projects led by researchers, in line with our research framework and the guidance of our medical advisory board and research partner.
We actively contribute insight to trials such as Cancer Grand Challenges’ Team CANCAN and the EU’s SPACETIME project, helping to guide research and outcomes. Our co-founders also work to bring clinical trials to the UK, and participate as a member of the 23andMe Lung Cancer Genetics Study, helping to ensure that research reflects patient priorities and informs future studies.
By attending and speaking at major conferences including BTOG, ESMO, IASLC WCLC and ASCO, we have built vital connections with physician-scientists and researchers, strengthening our role in shaping research that matters to oncogene-driven cancer patients..
COLLABORATION WITH OTHERS
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Collaboration is central to our work, helping us to amplify the patient voice and drive meaningful change. Our Chair sits on the board of the well-established research charity ALK Positive Inc (US) and we are active members of Lung Cancer Europe (Switzerland), ensuring patient perspectives shape advocacy, research priorities, directly serving on numerous committees. We have partnered on joint social media campaigns with Young Lung Cancer Initiative and EGFR Resisters, among other one-off collaborations powerful groups like LUNGevity, ALK Positive Inc, Same But Different & others.
FUNDRAISING & EXPENDITURES
This year, our supporters helped make our work possible through one-off gifts, regular donations, creative challenges and personal milestones. Support came in many forms: friends ran the 2024 Paris Marathon, ran a 10k, took on a Tough Mudder, completed a Hyrox competition, dedicated birthday fundraisers, and donated wedding and inheritance gifts. A supporter secured a large gift from his employer, and our co-founders donated honoraria, while OCR received honoraria for advisory board participation. Passive donations from our supporters’ use of EasyFundraising also contributed.
Title Our website was generously created pro-bono by Axis Twelve, which also pays for our annual website costs and domain. The majority of the tools we use are free to charities. words Any tools that require payment are covered by directly by our co-founders, not donor funds. In future any costs will be covered via sponsorship.
More words Importantly, 100% of all funds raised this year will go directly to research. The only cost incurred in this first financial year was membership to Lung Cancer Research, and this was personally funded by a co-founder.
In our first year, our co-founders also began planning OCR’s inaugural charity ball, which took place on 1 Nov 2025 and generated £35,000 after costs — a remarkable milestone that will be reflected in the next financial year.
Our efforts in the first financial year have enabled us to raise nearly £59,000 to fund seed grants and accelerate research into oncogene-driven lung cancers.
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Mel - a leading voice for stage 4 EGFR lung cancer Mel’s story was one of the first we shared, highlighting the challenges of getting diagnosed when you don’t fit the typical profile. We continue to collaborate on Instagram posts, with content regularly reaching six-figure audiences to educate, inspire, and support the lung cancer community. We are proud that Mel has become a prominent public advocate in the UK, appearing on TV, in print, and on speaking platforms.
Heidi’s heart attack after curative lung cancer treatment
After curative chemo-radiation for inoperable stage 3A lung cancer, Heidi, co-founder of the White Ribbon Project, faced an unexpected second diagnosis six years later: a heart attack. Her story anchored our cardiotoxicity series, highlighting the long-term treatment risks and reaching over 31k views on TikTok & patients actively asking for cardiology monitoring.
A FEW OF OUR COMMUNITY STORIES
Kathrin - redefining who gets lung cancer at 44 Kathrin was a healthy fitness professional when she developed foot pain that landed her in hospital. It was stage 4 ALK+ lung cancer. Her patient story on Instagram achieved over 87k views, 79k views on TikTok and her interview on YouTube achieved over 10k views - helping to people understand that anyone can get lung cancer and there is a lot of hope.
Sarah highlights the need to take control of care following her EGFR lung cancer at 41
A healthy marathon runner and filmmaker, Sarah was diagnosed with stage 3A EGFR lung cancer at 41 and sadly progressed to stage 4 within months. Her story highlights the importance of patient empowerment and self-advocacy, including pushing for the FLAURA-2 approach before it was available in the UK. Her story reached over 20k views on Instagram.
Steve’s advocacy for surgery for his stage 4 ALK+ lung cancer treatment
Honouring Michael’s legacy and his widow’s search for answers
Steve had been told surgery for his stage 4 lung cancer wasn’t an option. He proved them wrong. Steve formed part of our educational surgery series given the absence of patient materials. We developed an informative webpage & downloadable medically-vetted materials and patient stories.
Michael, a retired military skydiver, died from large cell lung cancer. After his death, his wife discovered an STK11 mutation in his paperwork, raising questions about its clinical significance. This story underscores the importance of understanding biomarkers and shared decisionmaking.
STRUCTURE, GOVERNANCE & MANAGEMENT
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Oncogene Cancer Research is a Charitable Incorporated Organisation (CIO). The charity is governed by its constitution, which provides for a minimum of two and a maximum of 12 Trustees. The charity is registered for Gift Aid.
During the year, the Trustees met formally 10 times. In addition, the co-founders met weekly to progress the charity’s objectives and oversee delivery of its activities. A new Trustee was appointed on 5 March 2024.
Day-to-day management of the charity is delegated to the co-founders, who also act as Chair, Secretary respectively and jointly as co-Treasurers. Trustees and other volunteers support specific projects such as Gift Aid administration. The charity has no paid staff at present.
The Trustees are responsible for the overall governance, strategic direction and legal compliance of the charity. The Trustees regularly review risks to the charity and have appropriate controls in place to manage these risks. Conflicts of interest are declared and managed in accordance with the charity’s constitution and good governance practice.
The charity uses Microsoft Teams to support meetings and the secure sharing and storage of documents and files. The charity has policies in place covering the acceptance and refusal of donations, grants and sponsorships, data privacy and cookies. As the charity grows, the Trustees will continue to review and develop additional policies, where appropriate to the charity’s activities.
| REFERENCE & ADMINISTRATIVE DETAILS |
|
|---|---|
| Oncogene Cancer Research OCR 1206988 23 Penzance St. London W11 4QX Charity name Other names the charity uses Registered charity number Chairity’s principal address |
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NAME OF THE CHARITY TRUSTEE THAT MANAGED THE CHARITY
Trustee name Office (if any) Yvonne Diaz Chair; Co-treasurer Jan Clark Secretary; Co-treasurer Helen Tankard
Dates acted if not for whole year
5 March 2024
DECLARATIONS
The Trustees declare that they have approved the Trustees’ Report as above.
Yvonne Diaz Full names Chair and Co-Treasurer Positions Yvonne Diaz Signatures 12 January 2025 Date
Jan Clark Secretary and Co-Treasurer
Jan Clark
12 Janauary 2025
CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Sectlon A Independent Examlner's Report Report to the trusteesl m•mbgrs of Carter Research On accounts for the perlod ènded 13 February 2024 to 5 Aprl 2025 Charlty no (11 any) 12C6988 Set out on pages 4t010 I rewrt lo the Iruslees on my examinatn of Ihe accwnts of above charity ("the Trusf} fw the perK¥J erKled 05 Awl12025. Responsiblltties and As the charty Iruslees of the Trust, you are re$FOnble for the prepar8tL)n basls of report of the acc(NJnts In accordance with Ihe requirements ol the chan15 Act 2011 1.the Acl.). I reFQrt In r8SFrfI of my 8xaminalion of the Trust's accounts carried (xrt under s6clThi 145 of the 2011 Act and in carrying (YJI my examinati, I have followed Ihe applicabl8 Directws given ty the Charity CMimi&s under seGlion 14515)Ibl of Ilie Act. I have completed my examinats'on. I c(li(M that rn malenal matters have ome lo my attenb'on loiher than Ihal disclosed b8k)w ') in ¢onrCliC with Ihe ex8minab.on which gives m8 cause to bve that in, any material respect: accounting records ww8 not kept In COrdanCe wrth 130 01 the Act or the aGGounts do not accord with the accounbng rec(xds Independent examlnerfs statement I have concerns and have come across rn other matters in cne¢t)n with the examinatn lo which attenkn'on th)uld be drawn in wder to enatAe a proper understanding of the accounls to b8 reached. Slgngd: Date: 12 January 20 Name: Cdin R Botfiekl Relevanl profe8slonal quallficatlon(s) or body (If anyl: Not required as Revenue less than £2,[) Addre8S.' 29 Dirfelcffi Gate Bearsden Glasgow G611NP IER October 2018
Oncogene Cancer Research : Accounts
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Oncogene Cancer Research Report and Financial Statements
05 April 2025
Registered No 1206988
Directors
Yvonne Diaz Jan Clark Helen Tankard
Secretary
Accountants / Auditors
Colin Botfield of OMCF Ltd Gallone & Co 14 Newton Place Glasgow G3 7PY
Bankers
Metro Bank Southampton Row London
Registered Office
23 Penzance Street London London W11 4QX
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Directors' report
The directors present their report and financial statements for the year ended 05 April 2025.
Results and dividends
The profit for the year after taxation amounted to £58,288.
Principal activities
Charity raising money to fund innovative cancer treatments and research. All funds are unrestricted though raised on basis put to charitable purpose and governance costs.
The trustees acknowledge their responsibilities for preparing accounts, keeping records and safeguarding assets and acting in interest of the charity and its aims. More information can be found on website.
These accounts cover the period from foundation and registration 13 February 2024, Future accounting periods will be for year ended 5 April.
The directors are Trustees.
Y Diaz Trustee
Directors
The director(s) shown below have held office during the whole of the period
Yvonne Diaz
Jan Clark
The director(s) shown below joined the company during the period
Helen Tankard on 06 April 2024
Political and charitable donations, for the period under review and previous period.
None in year but appraising possible projects to support,
Company policy on the employment of disabled persons, for the period under review and previous period.
Encouraged
A full trustees report is available on charity website. The first year was largely devoted to fundraising
These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies regime and in accordance with the Financial Reporting Standard for Smaller Entities (effective 2008).
On behalf of the board
Name: Yvonne Diaz
Status: Director
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Status: Director Name: Helen Tankard Status: Director Date: 09 January 2026
Name: Jan Clark Status: Director Date: 09 January 2026
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Profit and loss account
for the year ended 05 April 2025
| Notes Turnover / revenue Cost of sales Gross Profit/(Loss) Distribution costs Administrative expenses Other Operating Income Profit/(Loss) on disposal of fixed assets Operating profit/(Loss) Interest receivable and similar income Interest payable and similar charges Profit or (loss) on ordinary activities before taxation Tax on profit on ordinary activities Profit/(Loss) for the financial year after taxation Dividends for the period Profit or (loss) for the financial year The notes form part of these financial statements |
2025 £ 0 (0) |
|---|---|
| 0 (0) (624) 58,626 (0) |
|
| 58,002 353 (0) |
|
| 58,355 (67) |
|
| 58,288 (0) |
|
| 58,288 |
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Statement of total recognised gains and losses
Item Description 2025 £ Total recognised gains and losses for the period: 0
Total recognised gains and losses for the period:
The Statement of Financial Activities for the Period Ended 5 April 2025 is the Profit and Loss Account above. Funds raised and held are unrestricted.
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Statement of Financial Position
As at 05 April 2025
| Notes Fixed assets Intangible assets Property, plant and equipment Financial assets Total fixed assets Current assets Inventories Debtors Cash at bank and on hand Total current assets Creditors:amounts falling due within one year 2 Net current assets Total assets less current liabilities Creditors:amounts falling due after more than one year Provision for liabilities Total net assets (liabilities) The notes form part of these financial statements |
2025 £ 0 0 0 |
|---|---|
| 0 0 0 58,805 |
|
| 58,805 (517) |
|
| 58,288 | |
| 58,288 (0) (0) |
|
| 58,288 |
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Statement of Financial Position
As at 05 April 2025 continued
| Notes Capital and reserves Called Up Share Capital Share premium Profit and loss account Revaluation reserve Other Reserves: Shareholders' funds |
2025 £ 0 0 58,288 0 0 |
|---|---|
| 58,288 |
For the year ending 05 April 2025 the company was entitled to exemption from audit in accordance with sections 475 and 477 of the Companies Act 2006 relating to small companies and no notice has been deposited under Section 476 of the Act.
The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of accounts.
These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies' regime and in accordance with the provisions of FRS 102 Section 1A - Small Entities.
The financial statements were approved by the Board of Directors on: 09 January 2026.
SIGNED ON BEHALF OF THE BOARD BY:
Name: Yvonne Diaz
Status: Director Name: Jan Clark Status: Director Name: Helen Tankard Status: Director
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1. Accounting policies
These accounts are of a Charitable Incorporated Organisation registered with Charity Commission in England and Wales with members which has adopted UK Generally Accepted Acocunting Principles, the historic cost convention and FRS102 Statement of Recommended Practice for charities as the basis for its accounts
There is no trading turnover. Donations and gift aid received thereon is treated as other operating income
The company has no fixed assets to depreciate
Trustees were unpaid in the period under review
Entity is exempt from Cash Flow statement
At the year end Shareholders Funds Per the Balance Sheet Statement of Financial Position Were Unrestricted
The Statement of Financial Activities is the Profit and Loss Account and the Surplus £58,288 is unrestricted.
Corporation tax is only payable on intrest received
The CIO does not have a share capital and its members have no personal liability.
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2. Creditors: amounts falling due within one year
| 2025 | |
|---|---|
| £ | |
| Bank loans and overdrafts: | 0 |
| Amounts due under finance leases and hire purchase contracts: 0 | |
| Trade creditors: | 0 |
| Taxation and social security: | 67 |
| Accruals and deferred income: | 450 |
| Other creditors: | 0 |
| Total: | 517 |
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3. Related Party Disclosures
The Charitable Incorproated Organisation is under the control of its members but day to day its founders Jan Clark and Chair Yvonne Diaz act in control.
Jan Clark and Yvonne Diaz incurred some expenditure on IT equipment, web domains and travel on behalf of the C I O and operate from home but are not seeking repayment and these sums are not accrued. No wages were paid in the period nor sought.
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