High hopes for ALS Research with LoForLife Festival
February 7, 2024
In early 2024, the LoForLife Festival granted a €135.688 cheque to the Laboratory of Neurobiology at the VIB-KU Leuven Center for Brain & Disease Research, to continue funding research into Amyotrophic Lateral Sclerosis (ALS). We catch up with the lab to find out more about their research and their patient advocacy efforts.
ALS (or Amyotrophic Lateral Sclerosis) entered the spotlight in 2014 when the Ice Bucket Challenge took the internet by storm, making a massive impact in raising awareness of and accelerating the fight against the disease. ALS is a devastating neurodegenerative disorder which affects the motor nerve cells – cells in the central and peripheral nervous system that transmit signals to make muscles work – leading to muscle weakness that gets worse over time. There is currently no cure for this disease, and on average patients die within 5 years of onset.
The LoForLife Festival (previously "Lo-lands") was started in memory of Lorenz "Lo" Laevers, who had ALS. Three months after his passing, Lo's friends started this family-friendly music festival, the proceeds of which go towards funding scientific research into ALS. Since its inception in 2012, the initiative has raised a staggering contribution of over 600.000 euros. This money has been used to fund research into the disease's biological mechanisms at the Laboratory of Neurobiology, just one of several labs in Leuven, Belgium, working together to fight ALS.
"When our friend Lo lost the fight against ALS we wanted to do something in his name that could possibly benefit other patients that were diagnosed with ALS. We started Lolands as a day full of friendship, music, sports, and good food. In the next years, the festival unintentionally grew to be one of the biggest and coziest festivals in the region, so we could donate already more than €600.000 to the lab,” says Andy, one of the festival’s organizers. “Not only the festival but also the bond between the volunteers grew in all these years to form unbreakable friendships, just like Lo would have liked it.”
Ludo Van Den Bosch, Group Leader of the lab and recipient of the 2023 Generet Award, explains how their research has contributed towards a better understanding of the disease: “We've developed various models for ALS in the lab. For example, we use fruit flies, zebrafish, and rodents to study the disease process better. For several years now, it has also been possible to make induced pluripotent stem cells (iPSCs) from patient skin cells. These cells can be converted into motor neurons and muscles having the same characteristics as those in ALS patients. This enables us to study the disease with greater precision.”
"It was thanks in part to the support of LoForLife that we were able to start using human stem cells in Leuven. Cultivating human nerve cells is an expensive undertaking, with a considerable initial investment needed to bring all the expertise in-house and to generate different stem cell lines of different forms of ALS." Philip Van Damme – award-winning researcher at the VIB-KU Leuven Center for Brain & Disease Research, neurologist at UZ Leuven, and professor at KU Leuven – explains. "However, the investment is paying off: by developing a new stem cell model, we identified astrocytes as key player in the neurobiology of ALS. This research might provide new therapeutic targets for ALS by targeting astrocyte activity."
To demonstrate their gratitude, some of the lab members volunteered behind the bar at the LoForLife festival, which took place in Scherpenheuvel, Belgium in September last year. Jimmy Beckers, a PhD student in the lab studying the role of autophagy in ALS, shares his experience of collaborating with LoForLife:
"It has been inspiring to see the bond and friendship it has created between the volunteers that organize the LoForLife festival. Volunteering at these kinds of events – as well as inviting LoForLife to visit the lab in return – ensures the strong bond between us, the scientists and the volunteers. It not only helps the volunteers to grasp why they are putting in all of the hard work, it also helps us to value all of the resources we have and to remind us of the purpose and goals of our research."