Working Together for a Common End
Cure Kids acknowledge that charitable funding, research in particular, does not exist in a vacuum. New Zealand has a rich culture of charitable giving and significant gains can be realised through like-minded organisations working together to increase the impact of investment. Here are some of our current funding collaborations:
Cure Kids and Child Cancer Foundation initiative
Cure Kids and CCF joined forces in April of 2018 launching the $1.2m Paediatric Precision Cancer Project (PPCP).
The project aims to improve treatment, survival and quality of life for children with poor prognoses cancers. Over 5 years, the PPCP will offer families an advanced diagnostic test called next-generation sequencing (NGS). The five-year programme is a first for New Zealand and has been designed to ensure that the potential benefits of precision genetic testing are available to patients regardless of where they live and at no charge to the family.
This advanced capability building is paramount if New Zealand is to enjoy the benefits enabled by genome sequencing. An estimated 100-120 children will be involved in the trial with potential for more beyond the five years.
We would like to thank the Child Cancer Foundation for sharing our desire to improve outcomes for those children and families unfortunate enough to bear the burden of cancer.
To learn more about this initiative, click here.
Collaboration to improve outcomes for CF patients
Cure Kids has been in the cystic fibrosis research space since our inception. Our co-founder Professor Bob Elliott discovered a newborn screening test for CF in the late 1970s which has contributed to improved survival and quality of life. Since then, we have enabled several research projects aimed at improving the treatment of children with CF, including a joint effort with CFNZ beginning in 2016 to provide targeted funding for cystic fibrosis research.
A workshop in 2018 – jointly hosted by Cure Kids and CFNZ – identified opportunities for enhanced collaboration across the cystic fibrosis community. Present at the workshop were researchers, clinicians and members of the CF community. One of the key outputs of the workshop was the need for an interconnected research, clinical and community strategy, and someone to drive it.
Dana Felbab (previously Uniservices and Roche Diagnostics NZ) has been jointly engaged by CK and CFNZ to lead this initiative. The aim is to identify research priorities for our CF community, connect the CF clinical and research communities locally and internationally, and determine how New Zealand can contribute to global research efforts.
New Zealand has a unique CF population which requires a unique solution. The ultimate goal of this collaborative initiative is to provide an accelerated path to realising health improvements for children and young people with CF in New Zealand.
Cure Kids has been working closely with New Zealand’s RF/RHD research community to develop a national research strategy with the bold aim of providing the evidence needed to end rheumatic fever and rheumatic heart disease in New Zealand. We have identified key research streams which are needed to address and ultimately prevent the increasing rates of rheumatic fever. Underlying all of these, is a whānau centred approach to govern and guide all aspects of the research – from conception to dissemination.
The wider RF/RHD network, that Cure Kids is part of, includes patients and whānau, clinicians, researchers and NGOs. There is wide agreement across the sector about the need for joined-up strategies and infrastructure to support a sustained effort. This alliance creates a truly collaborative framework to tackle the vision of ending RF/RHD in New Zealand. Achieving this will require organisations to set aside traditional boundaries and ensure that the strategic roadmap and associated funding is dynamic and responsive to the challenges, changes and opportunities that emerge.
For more information on this initiative, or how you can be involved, please contact Dana Felbab, Research Development Manager on 09 370 0222.