Leona Knox (Research Coordinator, Solving Kids’ Cancer, UK)
Leona’s role is to ensure Solving Kids’ Cancer effectively and efficiently delivers on its Research Strategy, as the charity strives to improve outcomes for children and adolescents with neuroblastoma.
As Secretariat to our Scientific Advisory Board Leona supports the board to function effectively and manages all administrative aspects of our grant review and award process, ensuring that we work to the standards and values required by the Association of Medical Research Charities (AMRC). She works in close collaboration with like-minded charities and parent advocates in both Europe and the US to achieve common goals, and undertake the major role of research advocacy within Solving Kids’ Cancer. As part of this Leona keeps abreast of scientific advances through peer-reviewed publications and attending major scientific meetings and conferences. As part of her role with the charity, Leona also leads on the development and delivery of the scientific agenda of our annual Neuroblastoma Parent Education Conference in London, selecting and inviting leading neuroblastoma researchers from around the world to share recent updates directly with the parent/patient population they are working to help.
Leona is a Steering Committee member of the international multi-stakeholder platform ACCELERATE, Affiliate Member of the American Association for Cancer Research (AACR), member of European pressure group Unite2Cure, and a member of the Kids v Cancer Parent Council in the US.
Leona’s son, Oscar, died from neuroblastoma in 2014 at the age of 5.
Donna Ludwinski (Director of Research Programs, Solving Kids’ Cancer, US)
Donna’s role as Director of Research Programs is to assist in identifying, analyzing, cultivating and reviewing exciting therapeutic leads with the hope of quickly bringing the most promising therapies to the clinic. To date, Solving Kids’ Cancer has funded 34 paediatric cancer research projects, 12 studies are currently enrolling and 4 new trials are set to open in 2018.
As a research advocate Donna is passionate about understanding and working with all stakeholders (researchers and clinicians, industry, regulatory agencies, and nonprofits) to stimulate and speed systemic advances for better outcomes in children with cancer. Her focus is on strengthening international links and seeking opportunities to collaborate on international research studies in order to increase access to treatment for children, as well as scientific understanding of this disease. She is closely connected with the neuroblastoma parent and patient community, providing hands-on support to families seeking information about clinical trials across Europe and the US.
Donna is an active member of the New Approaches to Neuroblastoma Therapy (NANT) Advisory Council, Coalition Against Childhood Cancer (CAC2) Board, and National Cancer Institute (NCI) Pediatric Central Institutional Review Board. She is also a member of the American Association for Cancer Research (AACR) Pediatric Cancer Working Group (PCWG), and was a member of their Steering Committee 2015-2018. Donna also serves on the Pediatric Oncology Subcommittee of the Oncologic Drugs Advisory Committee (PedsODAC) for the US Food and Drug Administration (FDA).
Donna’s son, Erik, passed from neuroblastoma in 2010 at the age of 24.
Nick Bird (Volunteer | Research Trustee, Solving Kids’ Cancer, UK)
Nick helps to shape the research activities of Solving Kids’ Cancer in the UK, using his detailed knowledge of the neuroblastoma research landscape and strong links to other research advocates and members of the scientific community in both Europe and the US.
As a lay-representative on our Scientific Advisory Board Nick provides insight from the parent and patient community that helps to ensure that maximising direct benefit to children with neuroblastoma is a primary consideration in all our decision making. .
Nick was a nominated as Patient Expert for the National Institute for Health and Care Excellence (NICE) Technology Appraisals of the anti-GD2 monoclonal antibody therapy drugs dinutuximab and dinutuximab beta between 2015-2018. He played a leading role in Solving Kids’ Cancer’s successful appeal against the decision by NICE not to recommend dinutuximab for use on the NHS in England and Wales, and subsequently helped to secure a positive recommendation for dinutuximab beta for the benefit of children with neuroblastoma. Nick is also a Consumer Member on the National Cancer Research Institute (NCRI) Children’s Cancer and Leukaemia Clinical Studies Group (CSG), and lay representative on the neuroblastoma specific research sub-group.
Nick’s son, Adam, died from neuroblastoma in 2013 at the age of 9.