The president and chief executive officer of The ALS Association provided insight on the most pressing needs for patients with ALS and the organization’s focus going forward. [WATCH TIME: 5 minutes]
WATCH TIME: 5 minutes
"What’s heartening is how many people have come into the ALS space wanting to help and press the gas pedal as fast as we can. That sense of urgency is palpable in every conversation that I have. When we think about the future, how are we going to work as not only an ALS community but as a neurology community?"
With a mountain of symptoms and only 2 FDA-approved medications to utilize, the amyotrophic lateral sclerosis (ALS) community has been longing for new therapeutics and improved quality of life. Affecting nerve cells in the brain and spinal cord, this neurodegenerative disease is characterized by muscle weakness that spreads and gets worse over time. In addition to the issues with cognition and movement, these patients may face several other complications, including breathing, speaking, or eating problems, as well as potential for onset of dementia.
Hearing the priorities of what is important to patients and their caregivers is the driving force for organizations like The ALS Association. For decades, the nonprofit has dedicated efforts to improving research, strengthening the pipeline of therapeutics, and alleviating the challenges that patients with ALS face. Calaneet Balas, MSc, MBA, president and chief executive of the organization, believes that one of the main focuses going forward will be to view the disease from a more neuro-centric lens and identify areas that translate across other diseases.
In an interview with NeurologyLive®, Balas discussed the main areas of need within the ALS community, noting aspects such as caregiver burden, policy changes, and prevention. She also gave her last minute thoughts on the mission of The ALS Association and some of the specific goals the organization is looking to achieve in the coming years.