Previewing ALS Association’s Inaugural Nexus Conference: John Novak, MD, MS

WATCH TIME: 3 minutes

"One big topic is the cost of ALS care. It's a huge problem. Medications can be expensive, but symptomatic care, like non-invasive ventilators and durable medical equipment, are also costly. We need to work on solving this problem across the spectrum of care, from mild to severe end-stage care."

Over the years, the understanding and care for patients with amyotrophic lateral sclerosis (ALS), a devastating neurodegenerative disorder, has improved. While there are no approved disease-modifying therapies, there has been great strides in biomarker detection, drug development, and the epidemiology of the disease. More recently, the field saw its first approved drug for a genetic form of ALS, with the FDA and EU giving clearance to Biogen’s tofersen, an antisense oligonucleotide.

In the coming weeks, the ALS Association is hosting its first-ever annual conference, dubbed ALS Nexus, that will bring together leaders in the ALS community to connect, collaborate, and change the future of the disease. The event, which takes place July 14-17, in Dallas, Texas, features a variety of sessions that focus on the latest developments and opportunities in research, care, and advocacy. Notably, the conference is open to both clinicians, patients, and their caregivers in effort to better understand some of the greatest, current unmet needs of the disease.

Prior to the event, NeurologyLive^® sat down with John Novak, MD, MS, director of the OhioHealth ALS Clinic and vice chair of the ALS Association Care Services Committee, to discuss how the agenda for ALS Nexus aligns with current goals in the community. He discussed the issues with cost of care and the importance of an effective multidisciplinary approach. Furthermore, he spoke on the topic of prevention in ALS, identifying and diagnosing patients earlier, and the potential for targeted therapeutics in both sporadic and familial forms of the disease.

For more information and registration to the event, click here.