Leituala Fua Lefono and Aloese Lefono: Their story sparked a movement for Pacific families with Parkinson's disease. Photo: LDR / Mary Afemata
A Samoan woman from South Auckland has been honoured for using her lived experience caring for her husband with Parkinson's disease to create a support network for Pacific families in Auckland.
Aloese Lefono received national recognition for founding Aotearoa's first Pacific-focused Parkinson's support group.
What started with three people has now grown to more than 20 patients and carers, meeting monthly in Papatoetoe.
"Seeing the pain in my husband, that's how I see the pain in all of the other Parkinson's people," Lefono said.
Her advocacy is grounded in caring for her husband, Leituala Fua Lefono, who has lived with Parkinson's for 27 years.
She said the journey has been one of faith, sacrifice and determination.
"Sometimes I nearly gave up. No funding, I was doing all the organising, plus caring for my husband," she said. "But my husband would say, 'Why are you giving up on that special service? You know those people, they are very happy'."
Lefono received the 2024 Minister of Health Volunteer Award for Pacific Health Service, and said the honour is not hers alone, but shared with the community that walks alongside her.
Health Minister Simeon Brown presented the award on 1 May at the Papatoetoe church hall where the group gathers each month.
"You've seen beyond your own personal circumstances to see the needs of others," Brown told her. "People like you don't seek accolades, but it's important to honour and thank you for everything you do."
The idea for a support group was sparked when Lefono discovered there were other Pacific patients - but few were attending mainstream meetings.
She was told the settings were not culturally appropriate. So Lefono stepped in, and an educator agreed to work with her to create something new.
Since then, the monthly gatherings have become more than just medical discussion. They offer culturally grounded connection through food, Pacific languages, shared faith, and lived experience.
Though Parkinson's New Zealand funds the hall hire, the rest of the group's operations rely on volunteers. Lefono coordinates the meetings, translates material, arranges transport, and also runs a separate carers group.
"Caring for someone with Parkinson's can be so isolating," she said. "Our carers group meets too - we support each other."
From left: Dr Christina Buchanan, who nominated Aloese Lefono for the award, Aloese Lefono, Health Minister Simeon Brown, and Dr Fuafiva Fa’alau. Photo: LDR / Mary Afemata
Christina Buchanan, a research genetic counsellor at Auckland City Hospital, said Lefono's leadership has boosted Pacific engagement in health research.
After attending the group and working closely with Lefono, Buchanan began referring Pacific patients directly.
Buchanan nominated Lefono for the award and said her work goes far beyond support.
"She doesn't seek acknowledgement, but I think she deserves this acknowledgement," she said.
The group has also supported vital genetic research. In a pilot study of five Pacific patients under 50, all were found to have changes in the PINK1 gene - a rare result globally.
"Usually when people think about Parkinson's, they think about an old white man ... Here we had young, strong, Pacific people," Buchanan said.
"Because this is a genetic form of Parkinson's, I truly believe it's going to be one of the types of Parkinson's that we will cure first."
Despite the group's impact, Lefono said systemic support is still lacking.
"We've been working in silence. But Parkinson's is growing fast in our Pacific families - it's time people knew," she said.
"We need brochures in Pacific languages, awareness in churches and on radio, and research that reflects our people. We've been doing the work - now we need the system to meet us."
Local leaders have long recognised Lefono's service. Ōtara-Papatoetoe Local Board chair Apulu Reece Autagavaia said the board was proud to support the group when they applied for funding to attend a Parkinson's conference.
Harriet Pauga, Te Whatu Ora regional director Pacific health, describes Lefono as "one of our unsung heroes".
"Her lived experience makes it so much more intimate and effective for those who are suffering and those who are caregiving," Pauga said.
Remaining humble, Lefono credits God and her community.
"Without Him, I would not be able to do anything," she said. "It's not for me alone. It's for all of us who've been walking this path together. To God be the glory."
LDR is local body journalism co-funded by RNZ and NZ On Air.
