A Colombian research village in the fight against Alzheimer

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Aiming to revolutionise Alzheimer’s research and treatment, ETHZ spin-off Herencia is working with an international team of scientists to build a village in Colombia that will bring together research, medical care and social programmes for families affected by the disease. The project could become a global blueprint for dealing with Alzheimer’s.

Rafael Polanía and Caroline Lustenberger are establishing a comprehensive network to diagnose Alzheimer’s disease at an early stage and treat patients and their families. (Image: Daniel Winkler / ETH Zurich)

Nestled somewhere in the mountains of Colombia, there might lie a powerful weapon against Alzheimer’s, states and article signed by **Samuel Schlaefli**, freelance author. Francisco Lopera was sure of it. Lopera, a neuroscientist, who passed away in 2024, spent 40 years working with the residents of a village not far from the metropolis of Medellín. Here, thousands of residents live with a genetic mutation that causes them to develop Alzheimer’s at an early age, usually between 45 and 50, followed by the familiar progression: memory loss, problems with orientation and mobility.

Given their genetic predisposition to Alzheimer’s, this community is invaluable when it comes to researching the disease, providing a rare opportunity to study the development of the disease and potential therapies long before the first symptoms manifest.

The link between Alzheimer’s and sleep
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Neuroscientist Caroline Lustenberger first read about Lopera’s cohort in an article in Nature in 2019. Group leader at the ETH Chair of Neuronal Movement Control, she is best known for her research on sleep, having led the sleep laboratory at the Department of Health Sciences and Technology (D-HEST) at ETH Zurich since 2019. It was no coincidence that she began to take an interest in Alzheimer’s a few years ago. “In its early stages, Alzheimer’s affects regions deep in the brain that play a key role in sleep, arousal, and regulating our metabolism,” says the researcher.

Together with neuroscientist Rafael Polanía, Lustenberger has developed a method for assessing the risk of Alzheimer’s ten to twenty years before the first symptoms manifest. Polanía worked as a professor of decision neuroscience at ETH Zurich from 2018 to 2024. He went on to found the ETH spin-off Herencia Solutions AG together with Lustenberger and now devotes himself to the enterprise full-time.

It’s possible to detect Alzheimer with a smartphone?
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“To diagnose Alzheimer’s, we record pupil movements under specific conditions because they are our window onto the brain,” explained Lustenberger. Currently, this requires a laptop and an eye-tracker. In the future, though, eye tracking could also be done using a smartphone. This would make early detection of Alzheimer’s more accessible and would allow people to do it from the comfort of their own home – making it available even in low-income countries, where experts expect to see the greatest increase in Alzheimer’s in the future. “We’ve filed a patent for our method, which is one of the first digital biomarkers that allows for an early and globally scalable assessment of a person’s risk of developing Alzheimer’s,” said Lustenberger. The aim is to build a bridge from diagnosis to future therapies.

Polanía is a born-and-bred Colombian. But when Lustenberger told him about the article in Nature, it was the first time he had ever heard of this extraordinary genetic cohort in Medellín. He contacted Francisco Lopera, who led the neuroscience group at the University of Antioquia in Medellín until his death in September 2024. Lopera had previously worked with pharmaceutical companies on clinical trials for potential Alzheimer’s drugs that had proven ineffective.

“A few weeks later, I was flying out to pitch Francisco our method for early Alzheimer’s diagnosis,” recalls Polanía. “Francisco was convinced that Alzheimer’s research should focus more on early detection and prevention.” Which is why he recognised the great potential in the spin-off’s approach. Since that first meeting in Medellín five years ago, Polanía and Lustenberger have been working closely with the neuroscience group at the University of Antioquia to test and further develop their early detection method with this unique Colombian cohort.

Tripling of Alzheimer’s patients by 2050
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We can’t be surprised by some numbers: How many human beans are living now in Eart? More than 7.000? So so. ¿How many of them - us - are dealing with deseases?

The article in ETZH describes that Alzheimer’s is a deeply devastating disease – and one of the greatest challenges facing the global healthcare system. More than 55 million people worldwide are affected by various types of dementia. 60 to 80 per cent of those suffer from Alzheimer’s. According to a forecast published in The Lancet, that number is set to triple between now and 2050. The tricky thing with Alzheimer’s is that by the time sufferers find out they have it, the damage to their brain is usually already advanced and irreversible.

“It’s like an avalanche: you don’t see the damage until it’s too late,” stated Lustenberger. It’s one of the reasons previous clinical trials that pharmaceutical companies have conducted for Alzheimer’s therapies have been unsuccessful. By the time treatment begins, the damage to the brain is usually already too far gone. “We want to intervene long before the first signs of damage become visible,” says Lustenberger.

Why Colombia?
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But what are researchers hoping to find in this small village in Colombia that could help combat this increasingly widespread form of dementia? Francisco Lopera was always convinced that this community doesn’t just have the disease, they also have the cure to beat it. That belief stems from the discovery that Aliria Piedrahita de Villegas who, like many others in her community, was genetically predisposed to Alzheimer’s, did not progress to clinical dementia in old age, passing away at the age of 77 without pronounced signs of Alzheimer’s – a small miracle for many.

Lopera wanted to get to the bottom of things -wrote Samuel Schlaefli- and to conduct an autopsy on her brain for research purposes. For the strictly Catholic family, that was initially out of the question. “He got down on his knees and begged the family, in the name of Alzheimer’s research, to allow him to examine her brain,” remember Polanía. “Francisco was convinced that her brain was the key to a possible therapy.”

Working with researchers from Harvard University, Lopera ultimately identified a total of three gene variants in Aliria’s genome and the genome of other relatives that protected them against Alzheimer’s.

Based on these discoveries, researchers at Harvard University are currently developing gene therapies which have a protective mechanism of action that has already been demonstrated in animal models. They expect these therapeutic approaches to be ready for testing in initial clinical trials in humans soon. “Our digital biomarker aims to identify those individuals who are most at risk so that they can get early access to these kinds of studies and to future therapies,” says Lustenberger. “This will also increase interest in early Alzheimer’s diagnosis.” Very few people would undergo testing for a disease for which there is no treatment.

Social inclusion for those living with Alzheimer’s
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In order to bring together research, diagnostics, therapy and care, Lustenberger and Polanía collaborated with researchers from the University of Antioquia to develop their concept for “Villa Aliria”. “Research has to be embedded in a social programme for those living with the disease,” says Polanía. “The consequences of early-onset Alzheimer’s are dramatic. Typically, those affected still have children in their teens.” In poorer communities in Colombia, it is usually the close relatives who take care of those affected. That means that husbands and wives have to give up their jobs, or children can’t continue with school.

Which is why, several years ago, the research group in Medellín devised a programme whereby family members are supported among others, via caregiving programs, while at the same time receiving professional carer training at the university. This training is intended to secure the families’ livelihood once their relatives have passed away. To ensure these sorts of social programmes can be maintained long-term, the research team is currently setting up a charitable foundation which will have family members and other affected individuals from the community on its management team.

The foundation aims to ensure access to therapies for people on low incomes. It will also take on a supervisory role, ensuring that ethical principles are upheld in research on people living with Alzheimer’s. It is also hoped that by integrating patients and caregivers into Colombia’s healthcare system, the foundation can help break down the stigma around the disease. “We firmly believe that Villa Aliria can become a prototype for a holistic approach to Alzheimer’s,” says Lustenberger.

Care and research a stone’s throw from the city
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The location of the integrated research and care village for people living with Alzheimer’s has already been chosen, with the University of Antioquia providing a 130,000 m2 plot of land on the outskirts of Medellín. Lustenberger and Polanía are currently seeking investors and philanthropists for the first phase, with planned investments of ten million Swiss francs. At the same time, the first centre for people with Alzheimer’s is being set up in Medellín, a kind of satellite of Villa Aliria.

In the medium term, there are plans to make the Alzheimer’s village self-sustaining, financing itself through contributions from research groups and licence fees for diagnostics and therapies. “We’re this close to translating our findings from the Alzheimer’s cohort in Medellín into a globally scalable model,” says Lustenberger. “We need strong partners to make our vision a reality.” Lustenberger is convinced that this could give those at risk of developing the disease in Colombia and the rest of the world a realistic chance of preventing Alzheimer’s from the outset.

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