ALS, also known as Lou Gehrig’s Disease and Motor Neuron Disease, is a complicated condition. It involves the breakdown of the complex systems in the body that normally enable the brain to communicate with the muscles –leading to paralysis and, eventually, death. For newly diagnosed people with ALS, comprehending exactly what is going on in their bodies to cause their symptoms can be confusing and at times overwhelming.

To help address this issue, Her ALS Story and the ALS Therapy Development Institute (ALS TDI) have collaborated on a video that aims to explain the biological processes behind ALS. The idea was to share an educational video that could talk about the science of the disease while still being accessible to the average person.

To create the video, several of the young women with ALS from Her ALS Story contributed ideas about what they’d like to better understand about their disease. ALS TDI’s marketing team then used their feedback to create an animated video that could provide a scientifically accurate overview in a few short minutes.

After months of work, both groups are excited to be able to share the culmination of these efforts with the ALS community.  You can now watch the video, “Living with ALS: What’s Going Wrong in My Body?”, on YouTube.

Everything about ALS is overwhelming,” says Leah Stavenhagen, Her ALS Story’s Founder and President. “We are grateful to collaborate with ALS TDI to put together this video ­– we wanted to dumb things down so that we could actually understand what is going on with our bodies in simple terms. Super happy with the end result!”


What To Do Next: