The president and chief executive officer of The ALS Association discussed how prevention is being talked about in the ALS community and why it’s no longer a far-off reality. [WATCH TIME: 4 minutes]
WATCH TIME: 4 minutes
"We’re starting to understand some of the genetic issues we see that might create a cause effect. If we can understand the cause and what might happen, can we create policies in which people are informed they might be at greater risk? They might be informed about whether participating in a certain sport [may have an impact]. We know that our veterans are twice as likely to get ALS as opposed to the general population."
For decades, The ALS Association has been committed to discovering treatments and a cure for amyotrophic lateral sclerosis (ALS), as well as serve, advocate for, and empower those affected by the disease. Because of the numerous debilitating symptoms, short life expectancy, and limited toolbox of treatment options, the idea of prevention has rarely been discussed within the community and may not be seen as a high priority in the short-term. As part of a new initiative to make ALS livable by 2030, one of the organization’s focuses is prevention.
This process includes identifying risk factors for the disease, increasing access of genetic testing, treating as early as possible, and dedicating efforts to discovering new preventative treatments, among others. Calaneet Balas, MSc, MBA, president and chief executive officer of The ALS Association, is proud of the organization for encouraging and pushing for conversations centered around prevention. Although the drug development has not completely caught up to this patient group, there are ways of approaching prevention in the meantime, she says.
In an interview with NeurologyLive®, Balas shared more insight on the organization’s mission and why it continues to harp on prevention. She provided examples of how the community can tackle prevention and the need to increase awareness for the risks of ALS.