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Why I am a Trustee of CCRF
The Children’s Cancer Research Fund was set up nearly 40 years ago by the parents of Rosie Larkin, Lisa and Patrick. I lived in the same area and it was impossible not to be aware of the charity, as hundreds of local people, mums especially, were fundraising daily to raise money to find a cure for childhood cancers.
I was a new mum myself when I first met Lisa, not many years after the tragedy of losing their beautiful Rosie. I was horrified to learn about the painful and damaging long-term side effects of many treatments used on young people and the cancers, which like the one which killed Rosie, had no cure.
As an investigative journalist it was clear the only answer was research, yet funds, especially to start that process, are still the hardest to raise.
My role on the Board
Over the years, the way we all raise funds has had to change. My role as a Trustee has always been to try to steer the charity to find the best possible ways to raise funds, to build partnerships, and ensure we spend the overwhelming amount of what we raise on the most promising research. The Scientific Advisory Board was set up from the beginning to identify the most promising projects, ensure they are properly run and the results good enough to attract future funders. We are proud members of the AMRC (Association of Medical Research Charities) guaranteeing the rigour and probity of how we operate.
When I was asked to take on the role of Chairman, I led a fundamental review of the way we operate, focusing on more modern means of communication, on co-funding with other small charities and recruiting a small, highly
dedicated team of active Trustees and volunteers, supported by a few paid professionals. Of the many projects I have led, this is the hardest but the most worthwhile.
My Background
My career began as a BBC journalist & well-known television presenter. I later became a businesswoman and prominent leader of major urban regeneration projects, leading the teams which built and ran the Lowry theatre complex in Salford, set up and led the largest urban regeneration company in the country – Central Salford, and led the winning bid to move a large part of the BBC out of London, creating Media City UK.
I am also a former Chair of a major teaching and Research hospital Trust and was awarded a CBE for services to the arts and regeneration.
Why I became a Trustee
I became a Trustee of CCRF because this cause is deeply personal to me, having been diagnosed with Ewing’s Sarcoma twice in my life, first at the age of 8, and again at 21. I know first-hand the physical and emotional toll that cancer treatment can have on children and young adults.
I use my experience to advocate for better support, fund pioneering research for better treatment options for children, and help ensure that every child facing cancer has the best possible chance of recovery and hope for the future.
My role on the Board
My role as a Trustee is to provide a personal perspective on the treatment and diagnosis of cancer in children and young adults, championing the need for more research and funding for childhood cancer.
Bringing my legal experience, I also work with the Board in matters of risk and compliance.
My background
Professionally, I am a Legal Director at Shoosmiths’ and specialise in Financial Services Disputes and Investigations.
Why I became a Trustee
I became a Trustee of Children’s Cancer Research Fund because I believe in the transformational power of early-stage pioneering research in improving outcomes for children and families affected by cancer.
My role on the Board
I am responsible for advising the board on CCRF’s fundraising strategy.
My Background
I have over 25 years’ experience in fundraising and donor relations. I am Director of Development at Withington Girls’ School and previously served at Deputy Director of Development at the University of Manchester.
Why I am a Trustee of CCRF
I currently work with another Charity that looks after children and young people who have cancer and I have come to realise that much more early-stage research needs to be done. Whilst by no means an expert on the subject, I feel the only way I can help is to join CCRF and help bring the aims the Charity to the widest possible audience.
My role on the Board
I am fortunate in that I have quite a broad network of contacts and see my role as that of champion for the Charity, taking every opportunity to talk about the incredible work of CCRF.
My Background
I have spent all my adult life volunteering within the charitable sector and having recently retired as Vice Lord-Lieutenant of Greater Manchester, I feel I now have the time to give whatever support I can to this most worthy cause.
Why I became a Trustee of CCRF
My daughter, Ruth Grace, is a Young Ambassador of the charity and her involvement with CCRF (then Friends of Rosie) inspired me to join the Board as a Parent Trustee. As a family, we’ve experienced first-hand the devastation caused by childhood cancer. You can see our story here and also hear from Ruth herself.
My role as a Trustee
As a Parent Trustee, I’m here to give a parent’s perspective on the work of the charity, helping ensure that children are at the heart of every decision we make at CCRF. I also lead on the organisation of our annual Children’s Christmas Party for children in treatment on Ward 86 and the Bone Marrow Transplant wards at The Royal Manchester Children’s Hospital.
Why I am a Trustee of CCRF
I have spent my professional career representing individuals and families affected by the devastating asbestos-related cancer, mesothelioma, which has no cure and for which there are only a limited number of palliative treatments available on the NHS.
I joined CCRF because I wanted to bring my understanding of the need to raise awareness of less well known cancers and passion for the need to secure improved funding for research to children facing a cancer diagnosis.
My role on the Board
I am responsible for oversight of our collaboration agreements with other charities to co-fund research into cures and treatments for childhood cancers. I also manage our challenge events and help with community fundraising.
My Background
I am a Senior Associate at Irwin Mitchell LLP and specialise in Asbestos Disease Litigation, acting on behalf of victims of asbestos related diseases and their families. Over the years, I have undertaken a number of fundraising challenges to raise money for cancer research, including a 1000 mile cycle ride from Glasgow to Southampton.
Why I Became a Trustee of CCRF
As a parent of a child diagnosed with rhabdomyosarcoma at just two years old in 2017, I have seen first hand the profound impact that childhood cancer has on families. Becoming a Trustee of CCRF allows me to use my lived experience to advocate for children, young people, and families facing similar journeys. I am passionate about helping to ensure that research, support, and resources continue to evolve in ways that truly meet the needs of those affected by childhood cancer.
My Role on the Board
As a Parent Trustee, I bring a parent’s perspective and the voice of lived experience to the strategic discussions and decisions of the Board. I aim to help with fundraising initiatives whilst ensuring that compassion, understanding and the heart of CCRF’s work is focussed on the children facing cancer and their families. Motivated by the hope that kinder and more effective treatments are found so that all children can go on to live happy healthy lives.
My Background
I hold a degree in Fine Art and am deeply passionate about art education for young people. My career has taken me from schools in the UK to teaching on the island of St Helena. I believe in the power of creativity to heal, inspire, and connect and I bring this belief into all areas of my work, both in education and within CCRF.
Lorna is Senior Research Fellow & Patient Engagement Lead at the CCLG TYA Research Centre. She is also a Director at the University College London Hospitals NHS Foundation Trust.
Lorna is an internationally recognised leader in teenage and young adult oncology, with 20 years’ research experience across academic, industry, clinical and healthcare settings. She has led a diverse research and development portfolio. Her expertise includes early diagnosis and detection, research and innovation, inequalities in access to care and research, and patient engagement. A member of the Department of Health and Social Care Children’s and Young Persons Advisory Task Force, Lorna chairs national multi-stakeholder and patient initiatives and is an invited keynote speaker, media contributor and parliamentary presenter.
Nancy, 11, was diagnosed with rhabdomyosarcoma when she was just 2 years old. She was treated with Proton Beam Therapy (PBT) in Germany but unfortunately relapsed less than a year later. The family were then sent to Germany for a second round of PBT. Although treatment helped to cure Nancy’s cancer, she has been left with lots of lasting effects which will require ongoing treatment throughout her life. Here Nancy and her mum, Antonia, share their story in the hope it will help others, raise awareness, and raise more money for children’s cancer research.
