They reached out for our help and you can't say no.
XDP strikes Filipino men in their 20s-30s, causing severe uncontrolled movements, muscle spasms and tremors that often leave patients bed-bound without adequate resources. Auckland researchers established a brain bank on Panay in 2019, training local staff to preserve donated brain tissue for research at Auckland and Harvard universities.
- X-linked dystonia parkinsonism strikes Filipino men in their 20s-30s, causing severe uncontrolled movements and often leaving patients bed-bound
- About 6 in every 100,000 people on Panay island have XDP; the island has a population of 4.5 million
- The XDP Brain Bank on Panay launched in 2019; over 100 brains have been processed for research
- Auckland researchers identified the disease signature in the striatum and plan to publish findings in 2026
University of Auckland neuroscientists are collaborating with Philippine communities to research X-linked dystonia parkinsonism, a degenerative brain disease affecting Filipino men, using tissue from a brain bank on Panay island.
On the island of Panay in the Philippines, a degenerative brain disease strikes men in their twenties and thirties without warning. X-linked dystonia parkinsonism, or XDP, causes the body to betray itself—sudden jerking movements, muscle spasms, tremors that the sufferer cannot feel coming. A man reaches for his fork and his arm swings wildly. He tries to eat and his head twists backward, then forward. Some wrap towels around their mouths, hoping to trick their nervous system into stillness. Many lose the ability to walk altogether and end up confined to mattresses on floors, lacking even basic mobility aids.
About six in every 100,000 people on Panay carry this condition, which strikes only men of Filipino descent. The island's population of 4.5 million means hundreds live with this progressive disability, watching their independence erode year by year. Yet for decades, the disease remained poorly understood at the cellular level. No one knew exactly what was happening inside the brain to cause such devastation. The only available treatment was temporary relief from Botox injections, which eased symptoms for a few months before wearing off.
Eight years ago, neuroscientists from the University of Auckland decided to help change that. Distinguished Professor Sir Richard Faull, Associate Professor Henry Waldvogel, and Dr. Malvindar Singh-Bains began collaborating with communities in the Philippines to unravel the disease's secrets. The catalyst came in 2017 when Harvard University's Anne Young, Chief of Neurology, invited Sir Richard to join her on a fact-finding mission. Sir Richard had founded Auckland's Neurological Foundation Human Brain Bank in 1994, making him an obvious choice. Two years later, with funding from the Sunshine Care Foundation and the Collaborative Centre for XDP—established by Geraldine Acuña-Sunshine, whose brother has the condition—the XDP Brain Bank opened on Panay.
The work required more than scientific expertise. It demanded presence. In 2018, Dr. Singh-Bains and Professor Waldvogel arrived in the Philippines with suitcases full of equipment, ready to teach locals how to preserve donated brain tissue with the precision that research demands. They condensed months of training into four-hour sessions, working in Manila and on Panay itself. The methods they taught allow tissue from deceased patients to be shipped to Auckland and Harvard for analysis. Dr. Singh-Bains continues to guide the team remotely, sometimes through late-night video calls, walking staff and volunteers through the painstaking protocols. Over a hundred brains have now been processed by the bank.
The tissue has become the foundation for breakthrough work. Dr. Singh-Bains leads a team that has spent the past four years mapping what she calls the disease signature of XDP—the specific cellular and molecular changes that occur in the striatum, the part of the brain that controls movement. "We think we've finally cracked it," she said. The team plans to publish their findings later this year. Understanding this signature opens a new door: scientists can now replicate the disease in lab-grown brain cells and animal models, creating platforms to test potential treatments that might ease symptoms, prevent onset, or slow progression.
The human dimension runs through every layer of this work. Mothers who carry the gene that causes XDP experience no symptoms themselves, yet many carry deep guilt for passing the condition to their sons. Patients and families on Panay have expressed what Sir Richard describes as immense gratitude for the Auckland team's commitment. When he and Dr. Singh-Bains returned to celebrate the brain bank's tenth anniversary earlier this year, they met with about 400 patients, family members, and medical professionals.
Dr. Singh-Bains is direct about why this matters. "We get asked why brain scientists here in New Zealand are studying a disease that mostly affects people in the Philippines," she said. "Our answer is clear: We're trying to help humanity." Sir Richard's response is simpler: "They reached out for our help and you can't say no." The work ahead is uncertain—drug development takes years, and there is no guarantee of success. But for the first time, there is a map. For the first time, there is a path forward.
Notable Quotes
We've spent the past four years trying to figure out what the disease signature is in the striatum – and we think we've finally cracked it.— Dr. Malvindar Singh-Bains, University of Auckland
We're trying to help humanity.— Dr. Malvindar Singh-Bains, on why New Zealand scientists study a disease affecting the Philippines
The Hearth Conversation Another angle on the story
Why does this disease only affect men of Filipino descent? What's the genetic mechanism?
It's X-linked, which means the gene sits on the X chromosome. Women can carry it without symptoms, but men have only one X chromosome, so if they inherit the mutation, they express the disease. It's a cruel genetic lottery.
And the mothers—they know they're carriers. How do they live with that knowledge?
Dr. Singh-Bains spoke about the guilt they carry. They have no symptoms themselves, no warning signs, but they know they've passed something devastating to their sons. That's a different kind of suffering.
Why did it take until 2017 for serious research to focus on this? It's been affecting people for generations.
Rare diseases affecting populations in lower-income countries don't attract funding or attention the way they should. It took someone like Anne Young at Harvard reaching out, and Sir Richard having the infrastructure already in place, to make it happen. Geography and economics matter in science.
The brain bank itself—that's the real innovation here, isn't it?
Exactly. You can't study a disease without tissue. Getting families to donate their loved ones' brains, training locals to preserve them properly, shipping them internationally—that's the unglamorous foundation that makes everything else possible.
And now they've found the disease signature. What does that actually unlock?
It means they can stop guessing and start testing. They can grow brain cells in a dish that have XDP, run thousands of drug candidates through them, and see what works. It collapses years of traditional research into something faster and more targeted.
Do you think they'll find a treatment?
I don't know. But for the first time, the men on Panay have more than Botox injections every few months. They have hope that's grounded in actual science.