Rose Woodward – Founder

As co-founder of Action Kidney Cancer (formerly Kidney Cancer Support Network), Rose has worked tirelessly for many years to ensure kidney cancer patients in the UK have access to high quality care and the best possible treatment options. A long-term patient/survivor of kidney cancer herself, Rose is now an experienced patient advocate sharing her knowledge, experience and providing a strong patient voice at a national and international level on behalf of the kidney cancer community. Rose is a committed advocate on behalf of kidney cancer patients who wish to be involved directly in decision-making relating to their own care, and believes passionately that people directly affected by cancer should be part of the design and provision of cancer services within the NHS.

Together with Julia Black and Clive Stone MBE, Rose led the “Fight for Life” campaign which provided practical and bespoke support to several hundred kidney cancer patients refused access to clinically effective kidney cancer treatments. The campaign was ultimately successful when NICE agreed to review the criteria for End of Life cancer drugs and consequently in 2009, the first targeted therapies for kidney cancer were made available in the UK.

The principle of patients sharing experiences, exchanging information and supporting each other is why Action Kidney Cancer is the biggest and most active patient-led charity for people affected by kidney cancer in the UK.

Rose is a founding member and volunteer Board Director of the International Kidney Cancer Coalition (IKCC). Rose retired in 2018 from her record-breaking 10 years voluntary service as an expert patient representative on the National Cancer Research Institute (NCRI) Bladder and Renal Cancer Clinical Studies Group.

Julia Black – Charity Operations

An experienced patient advocate with over 15 years experience working on behalf of rare cancer patients. Julia began campaigning for fairer access to cancer drugs and treatments as the postcode lottery of access to cancer drugs first began to unfold. Since then Julia has worked on over 250 individual funding applications for patients desperate to access the treatments their clinicians wish to prescribe, the vast majority of which have been on behalf of kidney cancer patients.

In 2006, whilst helping a kidney cancer patient receive NHS funding for sorafenib, she met many kidney cancer patients all desperate to access clinically effective cancer drugs via the NHS. Her path crossed with Rose Woodward and between them they founded Action Kidney Cancer (formerly Kidney Cancer Support Network), the largest UK patient-led charity for people touched by kidney cancer.

Julia is also Operations Manager for the International Kidney Cancer Coalition (IKCC); a global collaboration of national patient groups supporting those affected by kidney cancer. She was also Head of Patient Support for the Rarer Cancers Foundation from 2011 until 2016.

Diagnosed herself with breast cancer in 2005 and 2008, Julia has undergone surgery and chemotherapy and understands how it feels to face a diagnosis of cancer. A passionate patient advocate who firmly believes patients have a stronger voice when working together and who should be involved in all aspects of their own care.

Sharon Deveson Kell BSc PhD MBA – Policy and Medical Affairs

Sharon is a clinical scientist with over 15 years’ experience working in the pharmaceutical industry, during which time she held a variety of roles in drug development, marketing, and senior management. She has been the global project manager on a number of clinical trials involving biologics, and has a good understanding of the drug development process.

During her pharmaceutical career, she was responsible for writing clinical study protocols and reports, patient information leaflets, and scientific papers. She was involved with writing and implementing training programmes for clinical researchers and project managers, and organising and running investigator meetings for clinical trial programmes. In her current role as a medical writer she has written numerous factsheets, booklets and decision aids for cancer patients, and organised cancer patient meetings for various cancer charities, including the IKCC. She has also part written and project managed an online renal cancer course for nurses.

Sharon has a first class honours degree in physiology and biochemistry from Reading University, and a doctorate in reproductive endocrinology from the University of Surrey. She achieved her MBA from the Open University in May 2000.

Karen McNee – Communication and Community Services

Karen is an experienced patient advocate, having worked extensively for patients in Scotland as well as the United Kingdom.

Karen has worked to improve access to new medicines for patients in Scotland. In the seven years that she has worked with kidney cancer patients, she has been instrumental in the approval of four new medicines by the Scottish Medicines Consortium (SMC), including the first immunotherapy medicine for kidney cancer, nivolumab. Karen has worked with government and pharmaceutical companies to ensure that the kidney cancer patient voice is heard to ensure better outcomes for them and their families. In the 9 years that she has worked for patients she has always believed that the patient should be at the centre of everything. This has been her guiding thought when considering patient support requirements, running and organising patient days, and setting up roundtables including patients, government ministers and clinicians. As a result of this, services that she identified as being required were then put in place, including a buddy scheme, counselling service and a lunch club. Karen has worked closely with clinicians to ensure that a complete holistic approach is given to the patient’s care.

In the past, Karen has represented the patient perspective at an international level ensuring that their perspective was heard.

She also works hard in the area of fundraising to help ensure that the funds are available to continue delivering identified services that will help patients and their families.

Steve Pointon – Community Development

Steve brings a wealth of experience from a senior management career in the security industry, where he oversaw over 200 field-based staff and managed contracts exceeding £1 million. Although he thrived in his role, the demanding nature of the job left little time for family life.

In August 2016, a routine scan for an unrelated issue revealed that Steve had kidney cancer. He underwent a nephrectomy the following month and returned to work shortly afterwards. In early 2018, further scans showed that the cancer had spread to the abdominal lymph nodes. He was referred to The Christie Hospital in Manchester, where he was told his prognosis could be just four years if treatment was unsuccessful. Thankfully, he was eligible for interleukin-2 (IL-2) immunotherapy. While the treatment was challenging, it proved successful, and Steve has been in remission since September 2018.

Following his second diagnosis, Steve discovered Action Kidney Cancer. The support he received from Rose and the community had a profound impact on him, inspiring a new direction in life. He retrained as a person-centred counsellor and now supports cancer patients and others through emotional and psychological challenges.

Since January 2019, Steve has served as an administrator of the Action Kidney Cancer online community. He later took on a formal role within the charity to help build supportive communities and strengthen connections with hospital teams. He is also passionate about public speaking and delivering training.

In 2024, Steve was appointed to the Board of the International Kidney Cancer Coalition, where he represents the patient voice on a global stage.

Nikki Radford FCCA BSc (Hons) – Accountant

Nikki is an experienced qualified Accountant.  She has run her own company for the past 24 years providing small companies with monthly management accounts to allow the directors of the company to make sound commercial decisions based on accurate and up to date information.

Clients have included companies in the construction industry, retail, the charity sector, and wealth management to name but some.

Prior to this Nikki worked as Company Accountant for a business in the broadcast industry; consolidating and coordinating the accounts from overseas subsidiaries, plus running the UK accounts department.

At Action Kidney Cancer everyone plays a part; we work together in a variety of ways to offer help and support. The charity couldn’t achieve half of what we do without the kindness and commitment of our many volunteers, and the generous donations and fundraising endeavours of our fellow kidney cancer patients, carers, families and friends. Thank you!