When I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
"My father was the life of the party; and my sister was always kind and giving,” explained Legacy Society member, Rob Morehouse of Coventry, Connecticut. These are just a few of the traits that Rob warmly recalls about his family – both of whom he lost to ALS.
In most cases, a person with a mutation in an ALS-linked gene usually has a 50-50 chance of passing it on to their children. But just because someone inherits an ALS-linked gene, it does not automatically mean they will develop the disease, and family members who develop ALS may have different disease experiences.
There is an urgent need for new and improved therapies for ALS, as there is still no cure. To help expand the drug development pipeline, we are proud to support the preclinical assessment of emerging ALS therapies like these through The Lawrence and Isabel Barnett Drug Development Program.
The ALS Association’s Lawrence and Isabel Barnett Drug Development Program supports the preclinical development of new or repurposed treatments for amyotrophic lateral sclerosis (ALS).
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. As muscles weaken and fine motor functions decrease, handling video game controllers and keeping up with fast-paced game play can cause frustration and cause people to give up on gaming all together.
There are a number of different ways people living with ALS can participate in research, from qualitative studies providing deeper insight into the experience of living with ALS to observational research documenting the progression of the disease to clinical trials testing the safety and effectiveness of new treatments. There are also research opportunities for family members of people living with ALS as well as current and past caregivers.