Special guest in our ALS labs
Last week, we welcomed Olivier Goy, a major advocate for ALS, philanthropist and ambassador of the Paris Brain Institute for a visit to our laboratories in Leuven, offering a valuable opportunity to connect patient experience with ongoing research efforts.
Olivier Goy was diagnosed with amyotrophic lateral sclerosis (ALS) in 2020, and has been fighting for both the furthering of research in this disease, as well as inclusion of disability ever since. On 26 March, Olivier visited several labs working in ALS within Mission Lucidity, a project born within UZ Leuven, and with partnerships with our Center, KU Leuven, and imec. Its main aim is to build bridges between clinicians, basic scientists and engineers in order to reach groundbreaking scientific and medical solutions for neurodegenerative disorders.
During the visit, the Da Cruz and Van Den Bosch researchers and Olivier exchanged perspectives on the complexity of ALS. A key theme was the growing recognition that ALS is not a single disease, but a collection of biological pathways leading to a similar clinical outcome, which is a challenge that requires coordinated and collaborative approaches to address.
The visit also underscored the importance of international initiatives such as CURE-ND4ALS, which brings together leading neuroscience centers across Europe such as Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Mission Lucidity, UK Dementia Research Institute (UK DRI), and Paris Brain Institute (PBI), to accelerate progress through shared data, biological samples, and clinical expertise.
Researchers showcased several areas of ongoing work at the center, including:
- The development of less invasive and more efficient diagnostic technologies
- Advances in gene-targeted therapies, building on recent successes in specific genetic forms of ALS
- Drug repurposing strategies that aim to identify treatments with potential benefits across multiple forms of the disease
It was a pleasure to welcome Olivier to our institute. His interest and engagement with our research made the visit very meaningful. Most of all, seeing hope spark in him was a reminder of the impact our work can have
The exchange provided a moment of reflection and cautious optimism, highlighting both the challenges ahead and the tangible progress being made.
After the visit, Olivier also opened the Breinfestijn, the a fundraising event organized by the Leuven Brain Institute that combines science and entertainment.
Engaging directly with patients remains a crucial part of advancing ALS research, ensuring that scientific innovation stays closely aligned with patient needs and perspectives. Liaising with patients and patient associations is a crucial part of our mission.
(Text: VIB-KU Leuven)
