Neuroscience for, with, and by patients

How scientific research thrives thanks to the patients it is aiming to treat

This blog post is part of VIB Neuroscience in the spotlight.

From raising awareness to raising funds, or in some cases even taking up a pipette and putting on a lab coat, patients are increasingly making an active contribution to research, including at VIB.

The World Health Organization estimates that doctors across the globe diagnose about 700 million new cases of mental and neurological disorders each year. A incredible number, even more so when you realize just how many of these patients have unmet medical needs.

Considering the huge personal and societal cost of brain disorders, it’s no wonder governments and funding agencies are investing in research to better understand brain health and disease. In fact, we’re still doing far too little, at least according to Bart De Strooper (VIB-KU Leuven, UK DRI), who has repeatedly stated that neuroscience research is hugely underfunded.

“Take dementia research, for example, the efforts in this field have been only a fraction of the efforts spent on other areas such as cancer research, so it is no surprise we lag behind with treatments.”
Professor Bart De Strooper, group leader at the VIB-KU Leuven Center for Brain & Disease Research
Professor Bart De Strooper, group leader at the VIB-KU Leuven Center for Brain & Disease Research

The urgency hasn’t escaped these millions of patients either, who are increasingly advocating for more research. From raising awareness to raising funds, or in some cases even going as far as taking up a pipette and putting on a lab coat themselves, patients are not just the target population of different lines of research—they are actively making a difference each day.

It’s no different in the various VIB labs and research projects focused on brain health.

Ice buckets and much-needed research funds

Remember the Ice Bucket Challenge? In the summer of 2014, ALS patients Patrick Quinn and Peter Frates started a challenge that quickly went viral: more than 20 million videos of people pouring ice cold water over their heads circulated on social media, including prominent world leaders and celebrities, all to raise awareness for ALS.

The challenge yielded hundreds of million dollars in donations and remains one of the most successful social media campaigns to date, a beautiful legacy for Frates and Quinn, who sadly passed away in 2019 and 2020, respectively, only in their late thirties.

Also locally, the ice bucket challenge provided a big injection of support and tremendously raised awareness about ALS, a devastating disorder claiming about 200 lives every year in Belgium alone. At VIB, Ludo Van Den Bosch and Philip Van Damme run a smooth tandem bridging biomedical research and clinical practice to understand the disease and help patients, supported through a long-term partnership with the ALS League of Belgium.

Watch the team of Professor Ludo Van Den Bosch perform the ALS Ice Bucket Challenge:

Despite the dire outlook for patients today, Van Damme remains optimistic that one day we will be able to ​ treat ALS: “When I started 17 years ago, only one gene was known to co-cause the disease, and there were very few studies. In the meantime, we know about twenty genes and more revealing research is underway.”

Joost Martens, director of the Belgian Alzheimer Research Foundation, also combines feelings of urgency with optimism: “Our research plays a leading international role in the search for a cure for Alzheimer's and other forms of dementia. It’s especially encouraging to see so much young talent moving into these fields.”

Since its inception in 1995, the Foundation has been able to invest 25 million euro in research, all through direct donations and bequests, the majority from patients or families directly affected by Alzheimer’s disease.

From awareness to involvement

Inspired by the philanthropy model existing in the US, VIB researchers have teamed up with clinicians and engineers on a shared mission: Mission Lucidity. Backed by the unique fundraiser’s platform Opening the Future, one of Mission Lucidity’s aims is to unlock new international funding opportunities through major international patient organizations and philanthropists, explains Chairman and serial entrepreneur Urbain Vandeurzen.

“It is my experience that when world-class researchers driven by a compelling vision and ambition, get access to sufficient resources and breakthrough technology, they can achieve what seemingly looked impossible. That is why with Mission Lucidity, we want to create the right conditions for them to do so.”

Donating blood & tissue

But patients have something more precious to give than money, namely a model to study disease.

“The proximity of and collaboration with clinicians is an essential ingredient for anyone studying disease,” says Kristel Sleegers (VIB-UAntwerp). Her research focuses on the genetics of brain disease, a field that has made major leaps over the past two decades in mapping who is at risk of developing which kind of disorder. She was part of a massive consortium bringing together scientists from Europe, the US and Australia, and more importantly, data on the genomes of hundreds of thousands of people, leading to the identification of more than 42 newly uncovered DNA regions that alter someone’s risk to develop Alzheimer's disease.

Professor Kristel Sleegers, group leader at the VIB-UAntwerp Center for Molecular Neurology
Professor Kristel Sleegers, group leader at the VIB-UAntwerp Center for Molecular Neurology

The advent of stem cell technology, and more specifically the ability to reprogram any bodily cell into another cell type, has revolutionized how researchers can model the nervous system in a petri dish. Skin cells are routinely biopsied from all kinds of patients and reprogrammed to grow into different types of nerve cells in the lab. This allows for a unique opportunity to study cellular disease mechanisms in a human context, often for cells with a specific genetic defect.

“These models have been a real leap forward, but they only take us so far,” explains Elja Eskes, who facilitates research collaboration as Head of the Collaborative Research Expertise Unit at the VIB-KU Leuven Center for Brain & Disease research. “As the brain is a complex organ in which different types of cells make billions of connections with each other, living human brain tissue, is far more complex than any of the materials studied in the laboratory.”

Eskes is talking about ‘fresh’ brain tissue, which is difficult to obtain because brain tissue is for obvious reasons never taken from a patient without good therapeutic reasons—which are very rare. But sometimes there are opportunities.

Eskes: “We ask people who undergo brain surgery to remove a piece of brain tissue, for example, to treat an extreme form of epilepsy, whether they are willing to donate the tissue for scientific research.” Thanks to this collaboration with the neurosurgery department at UZ Leuven, and of course the precious gift of such patients, a wide range of researchers can use the tissue to gain a better understanding of the brain and various brain diseases.

Going all the way

Some patients go all the way and embark on a scientific adventure themselves. One such a patient-researcher is Rob Prior (VIB-KU Leuven), who recently graduated with a PhD on Charcot-Marie-Tooth disease. As a form of the neuronal disease affecting sensory and motor neurons of the periphery runs in his family, he was determined to join the action, and even moved from his native Ireland to Belgium to be able to do so.

“Charcot-Marie-Tooth disease runs in my family: my mother is in a wheelchair and a few of my aunts and cousins are severely affected too,” Prior explains. “Being a patient myself, I already knew I wanted to be involved in research on this disease when I was only sixteen.” 

"During my undergraduate and MSc studies in Ireland, I followed the progress of every Charcot-Marie-Tooth disease lab in Europe and the US – there arent actually that many. None of them had a major breakthrough on the horizon in terms of therapeutic targets until the Van Den Bosch lab revealed its ground-breaking insights. As soon as I heard about that, I knew I had to get myself over to Belgium.” 

Over at NERF, PhD student Damon Verbeyst’s interest in neuroscience was triggered after injuring his spinal cord in an accident at age 17. He graduated as a civil engineer in computer science last year, and is now using machine learning and various computational approaches to identify meaningful patterns in the physical behavior of the animals and relate them to brain activity.

“My ultimate goal would be to develop tools that allow decoding of physical behavior from brain activity on a single-trial basis. Such tools are indispensable if we want to better understand and treat spinal cord injuries of thousands of people just like me..”

Learn more

If you want to dive deeper into brain health and disease, explore some of our resources, like our Alzheimer's facts series, or keep an eye out for interesting news and events where our researchers share new insights. We also have plenty of open positions for people eager to join us on our multi-faceted mission to unravel the mysteries of our brain.

Visit the webpage to find out more about VIB Neuroscience in the spotlight.

Want to help or get involved?

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Alzheimer Research Foundation -

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Demoucelle Parkinson Charity -

Wings for Life / Spinal Cord Research Foundation -

India Jane Wise

India Jane Wise

Science Communications Expert, VIB





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