Meet the ACTION Consortium
In October last year, we announced our biggest ever research funding award as part of the newly formed ACTION Consortium - a collective of five like-minded charities is committed to Advancing Clinical Trial Implementation and Optimisation in Neuroblastoma. By championing international collaboration, organisations Anticancer Fund, EVAN Foundation, Kindred Foundation, Solving Kids’ Cancer UK and Zoe4Life have set out one of the most ambitious calls seen in the neuroblastoma field. But how did the consortium come together? And what are we hoping to achieve? Get to know the organisations we are proudly working with on the ACTION Request for Applications...
Anticancer Fund
Who are Anticancer Fund?
The Anticancer Fund is a Belgian Foundation focused on cancer research. We support cancer research in unmet needs and resulting in societal benefit, worldwide. We are dedicated to expanding the range of treatments available to cancer patients, regardless of commercial value. The Anticancer Fund also helps people with cancer personally through My Cancer Navigator, a free information service. Cancer patients or people close to them can reach out with questions about their disease and treatment. Our team of physicians and scientists give them reliable and evidence-based answers, so that they can make well-informed decisions about their treatment. The Anticancer Fund works with key policymakers in the areas of research, treatments and cancer care. We contribute to the development of policy frameworks and regulations in order to increase benefits for cancer patients and the society as a whole.
Why have you joined the ACTION Consortium?
We joined this international consortium to find better treatment options for children with neuroblastoma and to advance neuroblastoma research. We believe that by working together with likeminded organisations we create opportunities. And, by joining forces, we can have more impact on the lives of these children.
What do you hope we will achieve together?
We believe that this grant award will leverage research innovation that will benefit children with neuroblastoma, but also stimulate the scientific community on collaborating to eradicate this disease. Moreover, the ACTION Consortium will raise awareness about neuroblastoma and will motivate and inspire funders to support our fight against the disease.
We are very enthusiastic about this international collaboration as this sets an example on how five organisations with shared value and mission can work together for the wellbeing of children with neuroblastoma. We hope that this collaboration will deliver promising projects. We wish for ground-breaking therapies.
The EVAN Foundation
Who are the EVAN Foundation?
Evan's Victory Against Neuroblastoma Foundation (The EVAN Foundation) is a non-profit childhood cancer organisation founded in 2011 and based in the state of Maryland in the USA. Our mission is to improve the lives of young patients and families through research, patient wellness, and advocacy programs. The organisation was established by Wendy and Gavin Lindberg in memory of their only child who passed away from high-risk neuroblastoma at the age of size.
Why have you joined the ACTION Consortium?
The EVAN Foundation joined the ACTION Consortium because high-risk neuroblastoma patients desperately need more effective and less toxic therapeutic options. The long-term survival rate for these children is unacceptably low and those fortunate enough to survive face a lifetime of significant health challenges due to the toxicity of current treatment regimens.
What do you hope we will achieve together?
It is our hope that funding from the ACTION Consortium will bring about transformational change in the treatment of this devastating paediatric cancer. We are particularly excited about the global reach of the initiative and the opportunity for international research collaboration - all funded exclusively by non-profit organisations seeking to drive change for children bravely battling high-risk neuroblastoma. There is nothing more important than saving the life of a child, and this program has the opportunity to do just that.
Kindred Foundation
Who are Kindred Foundation?
Founded in 2019, Kindred Foundation is a Canadian charity with a bold vision to advance cures, treatments, and support for children, adolescents, and young adults experiencing health and life challenges in our communities. Kindred Foundation is dedicated to funding programs, projects, and research in the areas of childhood cancer, youth mental and physical health, and community support (e.g., end-of-life care for children and adults, food insecurity, etc.).
Why have you joined the ACTION Consortium?
At Kindred Foundation, we believe that we can achieve more by working together. Collaboration and partnership are at the foundation of everything that we do. The international collaboration established by the ACTION Consortium is a model for childhood cancer research funding. It not only brings together charities, but also researchers, clinicians, patient partners, and many others with the common purpose of pushing the science forward for a difficult-to-cure childhood cancer.
Antonia Palmer, Kindred Foundation’s Executive Director, also brings personal experience with neuroblastoma to her role and to the ACTION Consortium. In 2009, Antonia’s son, Nate, was diagnosed with stage 4 high-risk neuroblastoma at two years old. When Nate’s treatment was almost complete, his neuroblastoma relapsed, resulting in him going to the USA for an innovative clinical trial. In total, he was in intensive treatment for five years. In 2021, Nate was diagnosed with thyroid cancer, making him a three-time cancer survivor. Nate is now almost 16 years old and is doing amazingly well. Antonia, Nate, and their entire family feel immensely blessed and being a part of ACTION is a long-time dream come true.
What do you hope we will achieve together?
We hope that ACTION will deepen international research collaboration in neuroblastoma and create a precedent for future childhood cancer research projects. We understand that science is hard, and that a lot of science fails before any success is realised. No matter what happens in the research that is ultimately funded, we hope that we learn much more than we know now and that we learn where to go next. We hope more than anything that this will result in better treatments and outcomes for children with neuroblastoma. We know that this is a big goal, but at the core, this is why Kindred Foundation is a part of ACTION.
We have always dreamed of being part of a project like ACTION. Unfortunately, Canada doesn’t see as many clinical trials for childhood cancer as other parts of the world. Kindred Foundation’s participation in ACTION ensures that Canada will be involved, giving Canadian children with neuroblastoma a chance to access the resulting clinical trial.
Zoe4Life
Who are Zoe4Life?
Zoe4life was founded in 2013 by two mothers, Nicole and Natalie, who met at the hospital while their children were in treatment for cancer. Natalie's daughter, Zoé, had relapsed from neuroblastoma, and passed away due to the lack of available treatments to cure her cancer. The founders of Zoé4life saw the lack of progress in new drug development and put all their energy into advocating and funding research into innovative therapies for children with cancer, in particular neuroblastoma. Today Zoé4life has four areas of action:
- Support and accelerate access to new innovative treatments and research in paediatric oncology
- Finance projects and programs for children during their treatments
- Support families of children with cancer financially
- Raise awareness about childhood cancer and advocate on behalf of children, and their families.
Why have you joined the ACTION Consortium?
Joining the ACTION consortium was an obvious step to improving the possibilities of treatments for children with this deadly disease. We are particularly motivated by the fact that this is an international collaboration of charities working together.
What do you hope we will achieve together?
We hope that by joining forces, we will be stronger and be able to more quickly discover new ways of treating neuroblastoma so that one day, all children can be cured.
