Grant: Operating Grant: Joint Programme on Neurodegenerative Disease Research (JPND)

People living with motor neuron diseases (MND) have problems with speaking and swallowing, known as bulbar dysfunction. These problems can cause weight loss, trouble communicating and serious lung infections from food or liquid going down the wrong way. Many people also experience strong emotional reactions that don't match the situation - like laughing or crying for no clear reason. This is called pseudobulbar affect. Both issues can have a big impact on daily life, relationships, and overall well-being. Patients, families and advocacy groups have told us that these symptoms are among the most upsetting and difficult parts of the disease. But they are often misunderstood, diagnosed too late, or not treated in time. Around the world, health professionals don't always agree on how to define or measure these problems, and support services are not consistent across regions. Considerable gaps persist in our understanding of the causes and propagation of these symptoms. There is a striking lack of screening tools, diagnostic criteria, and there is a lack of research into the social and quality-of-life implications. In this project, we want to better understand how speaking, swallowing, and emotional problems develop in people with advanced MND. We also want to know how these issues affect people's quality of life, and what kind of support they need. We will study people in several countries using brain scans, speech and movement tracking, and interviews. We will ask people with MND and their caregivers how these symptoms affect their emotions, daily activities, and social life. The goal of this work is to create better ways to identify and manage these symptoms, and to design tools and services that are centered on the needs of patients and families. Our team includes experts in neurology, speech, psychology, brain imaging, and social science, and we are committed to making a real difference in the lives of people with MND, their caregivers and families.