The president and chief executive officer of The ALS Association expanded on the organization’s greatest goal—making ALS livable by 2030—and how it plans to work towards that over the next decade. [WATCH TIME: 3 minutes]
WATCH TIME: 3 minutes
"The first pillar we think about is: how do we think about treatments? How do we think about advancing these treatments? And where are we going to be putting resources? Where are we going to partner for those treatments? As we dig deep, we’ve decided to focus in on where our resources are going. Focusing in on preclinical therapeutic programs is going to be key."
Amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig Disease, is a progressive neurodegenerative disease that affects the nerve cells in muscles of both the upper and lower parts of the body. The disease forces nerves to stop working and die, cutting them off from triggering specific muscles and ultimately leading to severe muscle loss and paralysis. Reports suggest that about 12,000 to 15,000 people in the United States have ALS and most patients experience a survival time of 2 to 5 years, although it can variate.
There is no treatment to reverse damage to motor neurons or cure ALS. Although, treatments can help control symptoms, prevent unnecessary complications, and make living with the disease easier. To date, there are only 2 medications—riluzole (Rilutek) and edaravone (Radicava)—that are approved to treat ALS, though physicians will prescribe other medications to help manage other symptoms, including muscle cramps, stiffness, excess saliva and phlegm, and the pseudobulbar affect.
Since 1985, The ALS Association has been a global leader and a beacon of hope for the ALS community. Established as a national nonprofit, it has led the way in global research, while providing assistance for those with the disease through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships. Its latest and most notable goal aims to make ALS a livable disease by 2030.
To discuss how the organization plans to execute this goal, its president and chief executive officer, Calaneet Balas, MSc, MBA, sat down with NeurologyLive®. She broke down the reasons for focusing on lengthening lifespan, improving quality of life, and preventing ALS, and how the organization will work towards achieving those goals.