HE KORERO | OUR STORIES

As we count down the days until IIRC24, we want to highlight the enormous contribution that members of our keynote panel have made to saving lives. One of the beneficiaries was NPM senior researcher and panel Chair Associate Professor Karyn Paringatai, who has a very personal connection to her co-panellists, Erin Gardiner and Maybelle McLeod. If it wasn’t for the determination and work of Erin and Maybelle, the cancer causing CDH1 gene would not have been identified, and people like Karyn would not have had the right information to understand that they needed life-saving surgery.
 
The work of this exceptional panel resulted in all three panellists winning Te Pūiaki Putaiao Matua a Te Pirimia, the Prime Minister’s Science Prize in 2023 alongside Dr Jeremy Rossak, Pauline Harawira and Professor Parry Guilford, who have all worked to improve outcomes for people with the CDH1 gene.
 
Thanks to the work of this group, and those who worked for decades at Kimihauora Health and Research Clinic in Tauranga Moana, over 400 lives have been saved in Aotearoa and over 25,000 lives globally.
 
Maybelle was crucial to the discovery of the CDH1 gene. Thirty-odd years ago Maybelle was grief-stricken by the numbers of her whānau members who were dying at a young age. With her nursing background, Maybelle suspected a genetic issue was the cause. So she  contacted the genetics team at the University of Otago. After some months of understanding each other’s needs and boundaries, a contract protecting the whakapapa of the McLeod whānau was signed, and a research partnership was formed between the Cancer Genetics Laboratory at the university, and Kimihauora. Karyn says that contract was the first decision, in a list of many, where the McLeod whānau determined their mana motuhake within the health and research context.
 
After 18 months of working with the McLeod whānau in Tauranga, Parry Guilford identified the genetic mutation in the CDH1 gene causing the stomach cancer. The discovery was the beginning of new hope for the whānau, but also the start of a huge amount of mahi for the Kimihauora team who had the huge job of ensuring that each member of the whānau was tested for the gene. Over the past 30 years Kimihauora has provided support for whānau all around the country affected by the gene and built deep and trusting relationships with Tauranga Hospital surgeon Jeremy Rossak, who has carried out countless surgeries on those affected with the gene.
 
“The McLeod whānau and Kimihauora are an exemplar of how whānau can work with health care professionals and researchers in a way that works best for them. They have established respectful relationships that work for the hospital, researchers, and for affected whānau. The medical team and Kimihauora are able to have those difficult conversations to work through situations together and then reassess plans afterwards. Jeremy is really amazing in his work with whānau and he has operated on different generations of the same whānau to give them the best healthcare outcomes possible,” says Karyn.
 
Karyn was granted a Marsden Fund award in 2019 with one of her aims being to examine the importance of knowing one’s whakapapa. Karyn believes knowledge of whakapapa helped save her own life and the lives of others with the CDH1. “I have noticed that some people do not have a good understanding of their own whakapapa, however I believe it is important to know this information, so you are more empowered about your health and those of future generations.”
 
With the support of the Marsden grant, Karyn has supported Erin and Jeremy to co-present at international conferences, speaking about the importance of relationship building between patients and medical experts. “There is so much we can learn from the McLeod whānau: how they built relationships; how they were able to share health data on their own terms; and most of all, how they are not passive bystanders in the health of their whānau. The McLeod whānau are the template for how you can be proactive and empowered players in determining your own health outcomes,” says Karyn.