Involving members of the public in designing and running clinical trials is very important. Not only does it help us make sure the best interests of patients are always at the front of researchers’ minds, but it also provides valuable insights into patients’ experiences, that help to shape our research.
The Glo-BNHL Trial Management Group benefits greatly from the involvement of Nicole Scobie, Angela Lee and Dave Hulme. Similarly, Victoria Buenger and Willemijn Plieger-van Solkema bring a valued parent perspective to the Glo-BNHL Trial Steering Committee.
Nicole Scobie
Nicole is a parent of a childhood cancer survivor and advocates for better treatment access and the development of improved therapies for all children. She is Chair of the ACCELERATE Board and long-serving member of its Scientific Steering Committee, is a founding member and president-emeritus of Zoé4life, a Swiss non-profit supporting children with cancer, their families, and research. With extensive experience in incorporating patient perspectives into research strategies and clinical trial design, Nicole is a founding member of the ITCC and SIOPEN Advocate Committees. She serves on the board of CAC2, an international childhood cancer umbrella organization, and is a member of CCI-Europe’s R&I committee.
Dave Hulme
Dave became aware of the lack of research into B-NHL following the loss of his 12-year-old son, Alex, to the disease in 2011. Along with his wife, Nicola, Dave formed the Alex Hulme Foundation to make a difference for others in the future and as a legacy to Alex. With the support of Professor Amos Burke and Professor Suzanne Turner, the foundation was able to undertake a pioneering research project, the outcomes of which have supported the ongoing work in Glo-BNHL. Dave was invited to join the Glo-BNHL team due to his support for research and invaluable insight into the needs of patients in this area. He helps the clinical research team by providing a non-clinical and non-scientific viewpoint from a patient perspective.
Vickie Buenger
Vickie's daughter, Erin, fought neuroblastoma for seven years. After Erin’s death in 2009, Vickie continued her academic career while devoting time and energy to launching the Coalition Against Childhood Cancer (CAC2) on behalf of the many dedicated organisations and individuals striving to make a difference for children with cancer. She continues pursuing that vision in a variety of roles, including as President Emeritus at CAC2, and on the Board of the ACCELERATE Platform. She combines her academic background with her interest in the science and policy of childhood cancer as an advocate representative on the National Cancer Institute’s National Council of Research Advocates, on the Agent Prioritization Committee of the Pediatric Early Phase Clinical Trials Network, and in numerous other advocacy capacities.
Willemijn Plieger-van Solkema
Willemijn's son, Hidde, was diagnosed with Burkitt lymphoma at the age of four and is now 25 and doing well. Originally trained as a lawyer, Willemijn worked in the legal field for many years before focusing on advocacy. Hidde’s illness, and the deep gratitude for the treatment that helped him, led Willemijn to join the Dutch Childhood Cancer Organization - an organisation that supports families affected by childhood cancer and advocates for better care and research. She is now actively involved as a patient advocate in research projects aimed at improving survival and quality of life during and after treatment. Willemijn is honoured to be a part of the Glo-BNHL team, where she contributes her advocacy experience to support research focused on improving outcomes for children with cancer.
If you are interested in getting involved, please contact us at Glo-BNHL@trials.bham.ac.uk or contact Project Manager, Rhianna Parsons, below.
Rhianna Parsons, Project Manager, R.H.Parsons@bham.ac.uk.