The president and chief executive officer of The ALS Association highlighted a few of the major developments in the ALS field over the past decade, led by advances in technology. [WATCH TIME: 3 minutes]
WATCH TIME: 3 minutes
"We’ve seen a ton of new discoveries around genetics because the amount of genes that we’ve identified as a community has gone off the charts. That helps us tremendously when thinking about treatments and trying to understand the mechanism of the disease."
Although there has been little regulatory success to show for the amyotrophic lateral sclerosis (ALS) pipeline, the field has seen substantial progress in several other areas in the past decade. The ALS Association has been at the forefront of advancing the state of care for these patients through advocacy, research efforts, and local support. In recent years, they expanded access to investigational drugs by passing the ACT for ALS act, eliminated the 2-year waiting period before patients can received Medicare benefits due to disability, and have increased federal funding in both the Department of Defense ALS Research Program and the National Institutes of Health, among others.
From a research perspective, they’ve created opportunities like the ALS Roundtable Program and The National ALS Registry, as well as further emphasized areas such as ALS genetics, emerging investigational agents, and improving access to those medications. All these efforts align with the organization’s main goal of making ALS livable by 2030. Calaneet Balas, MSc, MBA, president and chief executive officer of The ALS Association, also believes the advances in technology will play a critical role in the future.
In a recent interview with NeurologyLive®, Balas discussed some of the major successes from within the field over the past decade. She commented on the improved awareness for the disease, how expanded capabilities of technology has changed care, and why there is promise surrounding young investigators with research interests in ALS.