For people living with ALS, both listening to and playing music can be beneficial to mental health and wellness and can provide an important connection to family, friends and community. As ALS progresses, the ability to participate by playing and creating music can become more challenging with the loss of motor function. But that doesn’t mean the ability to create music, and the ability to collaborate with others around music needs to go away.

For people living with ALS, the enjoyment and escape video games may have once brought is far too often another thing the disease takes from them. But a team of academics and researchers from Australia is exploring how people with ALS (or MND, as it commonly known in Australia) can still take part in and enjoy gaming.

When Anjo Snijders was diagnosed with ALS in 2017 at the age of 35, he and his wife Sascha realized the vision of their future with their two young children in the Netherlands was forever changed. Both teachers by trade, they began to look for resources to help explain daddy’s illness, but found little if anything. And with that, the story of Luka and the Lights was born.

ALS doesn’t care where a person lives, and a person with ALS in Florence, Italy is as much in need of reliable care and resources as someone in Florence, South Carolina. At the International Alliance of ALS/MND Association meeting in late 2022, proud “Mapper” members Amanda Stanko, senior solution engineer at Esri, and Pat (who joined remotely) shared how they are taking their clinic mapping tool internationally to provide the resource for people with ALS around the world.

For people with ALS, having access to an ALS multidisciplinary care center has been proven to both extend survival and enhance the quality of life for the people that attend. Clinics are neatly plotted on our locator map, making them easier for people living with ALS and their families to find.

More than 200 leaders from over 40 countries representing the International Alliance of ALS/MND Associations' many member associations came together, both in person and virtually, to share updates on the progress being made around the world in ALS care, support, technology, science and organizational development.