Speaking at the Childhood Cancer Conference 2023
It was a great honour to be invited to speak at the Childhood Cancer Conference 2023 last week. The very intense two-day conference, hosted by Children with Cancer UK, was the first held since the pandemic and my goodness, was it packed with passion.
I was happy to play a small part in a mighty conference, to have an opportunity to talk about Skye and some of the research Blue Skye Thinking have co-funded. Sharing the stage with two men I admire deeply – proactive problem solver and fellow bereaved parent John Rainsbury of Little Hero charity and Professor Steve Clifford from Newcastle University – the three of us delved into the issues facing children with high-risk medulloblastomas and how we are striving to address them. We also emphasised the need for collaboration and real-time data sharing if the community want to achieve the great outcomes it so desperately desires.
Among the speakers was Professor Kathy Pritchard-Jones, one of the UK's foremost experts in childhood cancer, who has been a consultant in the field for 20 years and is currently Professor of Paediatric Oncology at UCL and President of the International Society of Paediatric Oncology (SIOP). Another key member of the conference was Professor Pamela Kearns, Director of the University of Birmingham’s Institute of Cancer and Genomic Sciences and Director of the Cancer Research UK Clinical Trials Unit (CRCTU). As Director of CRCTU, she leads the research strategy for one of the UK's largest cancer trials units, delivering a trials portfolio of over 100 multi-centre and international cancer trials for a wide range of cancers, occurring in children, young people and adults. Notably, she is leading the National Children’s Cancer Trials Team responsible for the vast majority of the UK’s clinical trial portfolio for children and young people with cancer. We had a promising discussion about the importance of data sharing and I look forward to having further meetings with her over the coming year.
Professor Pamela Kearns
It was fascinating to hear in more detail from Professor Andrew Beggs, who spoke about the race to find vaccinations for Covid-19 and how a surge in focus on vaccines can have a positive impact on the cancer community if the funding is there. In contrast to this hopeful and groundbreaking talk about personalised medicine, you could have heard a pin drop when Professor Richard Sullivan spoke about the enormous global cancer challenges, particularly in developing countries, and left seismic, yet not insurmountable challenges for us all to help resolve.
It was a pleasure to meet and hear from some of the youthful and keen researchers who I very much hope the industry will work to nurture and support so they can continue the incredible work that current experts are doing. Less palatable conversations surrounding the release of funds from government-pledged investment through the Tessa Jowell Brain Cancer Mission (TJBCM) were aired and I will certainly be following up promises by the impressive Camille Goetz, spokesperson for TJBCM, regarding workshops to support more successful grant applications.
Sharing a table with Wendy Tarplee-Morris, founder of the Little Princess Trust, who, like me, never wanted to be part of this community and would do anything to have her precious daughter back –but has turned a simple idea into a multimillion-pound charitable organisation – was very inspiring and informative.
The highlight, however, has to be listening to and meeting with Ellen Bisci and Ace Manthey who talked so eloquently about their own personal journeys with cancer. Many people imagine a wild party at the end of successful, life-saving treatment but the stark reality for many is not only the threat of relapse, for which there are very limited treatment options and none for brain tumour patients, but also the reduction in ability to go on to have children in adulthood; incontinence; reduction in neurocognitive function; endocrine deficiencies; acute and chronic toxicities; risk of stroke; heart, hearing, sight and liver function issues; and many more to mention. Every individual is affected differently and to varying degrees, but given all that adversity, to stand up and be thankful for what they do have and to hear them publicly thank their families and the support of the community was incredibly heartwarming. Ace even recounted meeting my son Skye, and what a lasting impression he had carried with him to this day.
It has always been our family philosophy to be a doer not a bystander in life. Research and data are not the most digestible of topics to raise funds for or get excited about, but what if I said taking Benylin may hold the key to dramatically reducing many late onset neurocognitive issues for children with leukaemia under research at the moment? Research can be as simple or as complex as it needs to be to get results, so watch this space! It just takes some clever and driven individuals to want to make a difference. Whilst I would never have the acumen to aspire to be a researcher, I do see their infinite value and can play my part in supporting them. A big thank you to all our donors for helping to make this possible.
Conference Agenda Published by Children with Cancer UK