About ALS

ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease, is a nervous system disorder mainly affecting neurons that control voluntary muscle movement. The disease is progressive; the patient gradually loses the ability to move, speak, eat, and breathe on their own. However, there is great variability in the order of these symptoms.  

The life expectancy of a person with ALS averages about two to five years from the time of diagnosis. There is no cure for ALS, but there are treatments under development to slow the progression. Radicava, a new such treatment, was just approved by the FDA in May 2017. This was the first new drug for ALS approved in 22 years.

 Typical expenses for ALS patients as the disease progresses include home accessibility renovations, medical bills, home health caregiving, a power wheelchair, and other adaptive equipment for mobility and communication. 

The 2014 ALS Ice Bucket Challenge seems to have spurred a significant amount of new research on the disease. In addition to Radicava, there are a number of new drugs under development that may be available in the next few years.

If you would like to donate towards ALS research, our favorite organization is the ALS Therapy Development Institute (als.net). They say, "ALS is not an incurable disease. It is an underfunded one." You can donate in Mark's honor and ask for a notification to be sent to him. ALS-TDI gets 4 out of 4 stars on CharityNavigator. They do not make use of embryonic stem cell research. “The mission of the ALS Therapy Development Institute (TDI) is to develop effective therapeutics that slow or stop amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease), as soon as possible." They're a non-profit biotech firm in the Boston area with a large team completely focused on ALS. Two of their biggest accomplishments are finding a promising treatment (AT-1501) and creating the world's first and largest Precision Medicine Program for ALS. They say that "AT-1501 will not make it to the clinic without immediate philanthropic support."