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6 Headlines Parkinson’s New Zealand is the only national charitable trust in Aotearoa New Zealand providing information, education and support to people with Parkinson’s and Parkinson’s plus conditions, their whānau, carers, and health professionals. Visit www.parkinsons.org.nz or call 0800 473 4636. About Christina Dr Christina Buchanan is a research genetic counsellor in the Department of Neurology, Auckland City Hospital, and an associate investigator at the Maurice Wilkins Centre for Molecular Biodiscovery, a national centre of research excellence. She has strong ties to the Pacific, being born on Banaba, Kiribati, to parents of Scottish, Dutch and Indonesian ancestry. If you would like to enquire about genetic testing contact Dr Buchanan at CBuchanan@adhb.govt.nz. DIGITAL EVENT Ahistory of Pacific voyaging and Parkinson’s disease Join Dr Buchanan on Zoom Tuesday 18 July 7pm To register visit: bit.ly/42BRVVU Pasifika research methodology that encourages open, informal and respectful discussion. Fortuitously, a Pasifika Parkinson's support group already meets, and several members have consented to take part in the talanoa sessions. “My part is the narrative side, collecting their experiences and tracing their stories back to when they first felt symptoms,” Dr Fa’alau says. There is no word for Parkinson’s or dementia in Pacific languages. The disease is often referred to as a ‘palagi illness’ and can carry a stigma. “It isn’t a disease that exists in the traditional Pacific worldview. Some other reason would have been given for the disease in the past, maybe a curse,” Dr Fa’alau says. “We ask the PINK1 patients to think back to their grandparents or to recall stories about whether their ancestors had symptoms. It’s filling a gap in the knowledge of our past, while helping us to better plan our health response in the future.” Dr Fa’alau says the PINK1 patients are especially fearful of passing the gene down to their children and grandchildren. “We need to take that into account when planning our health services and making sure there is access to culturally- appropriate counselling and support.” EOPD is often misdiagnosed as it affects those under 50, sometimes even teenagers. Obviously, this is not an age when Parkinson’s is suspected. While the specific variant in PINK1 that is found in Samoan, Tongan and Tokelauan people is also found in people from Malaysia, Philippines and Guam, its early onset may explain the much lower carrier rates in Māori and Hawaiian populations. Dr Buchanan explains, “PINK1 EOPD commonly presents in the 20s or 30s as an unusual movement, say a limp, a twisting cramp or a weakness. One theory is that people with these symptoms likely wouldn’t have been chosen for the risky, vast voyages across the seas to Aotearoa and Hawaii. “It’s just a theory, but by looking at shared DNA and how distantly PINK1 patients are all related, a story will emerge about migration and why this particular mutation has been found at higher rates in the western Pacific. Hopefully it can also help people realise that their Parkinson's isn't a curse, but something that can be treated.” The research has attracted wide interest from other academics. Others briefed include Sir Collin Tukuitonga, Associate Dean of Public Health at the University of Auckland, who is helping provide research links and support. Researchers from the Michael J Fox Foundation for Parkinson’s Research are also on board, and are sitting in on talanoa sessions. The charity, founded by Michael J Fox, the world’s most well-known EOPD sufferer, funds a University of Otago study of the health needs of Māori and Pacific peoples with Parkinson’s disease using appropriate cultural models. While Dr Buchanan’s research will add to our knowledge of Pacific histories and genetics, the main purpose is to improve health outcomes for Pacific people. ”If you are Pasifika and started showing signs of Parkinson's younger than 50, you should talk to your doctor about getting this genetic test.” “'Knowing there is a single gene change that causes 80% of EOPD cases in a population is a significant advantage when it comes to diagnoses and treatment.” Dr Christina Buchanan