ALS Association | Strategic Alliance Partners

The director of the OhioHealth ALS Clinic and vice chair of the ALS Association Care Services Committee discussed the upcoming ALS Nexus Conference and how themes of the event align with the direction of clinical care. [WATCH TIME: 3 minutes]

John Novak, MD, MS, director of the OhioHealth ALS Clinic and vice chair of the ALS Association Care Services Committee, provided insight on the upcoming ALS Nexus Conference, the first ever educational event from the organization, spanning multiple days in July.

As part of our monthly clinician spotlight, NeurologyLive® highlighted neuromuscular disorder expert Merit Cudkowicz, MD, MSc, chair of neurology at Massachusetts General Hospital.

The senior vice president of research at The ALS Association talked about the complexities of ALS and the importance of collaboration in research at the 2023 MDA conference. [WATCH TIME: 5 minutes]

On King’s staging systems, ALSAQ-5 scores increased from 24.6 at stage 1 to 62.1 at stage 4, whereas for Milano-Torino Staging systems, patients’ ALSAQ-5 scores increased from 43.2 at stage 0 to 80.7 at stage 3.

Once thought nearly impossible to treat, ALS has seen another step of progress with the approval of AMX0035 and a future of potential therapeutics on the way.

The postdoctoral researcher at King’s College London provided background on why gene therapies have not seen as much success in treating ALS, and the need for additional validation of genetic mutations. [WATCH TIME: 3 minutes]

The postdoctoral researcher at King’s College London provided insight on the immunologic differences between genes linked with ALS, and the important aspects to consider for gene-targeted therapies. [WATCH TIME: 3 minutes]

The postdoctoral researcher at King’s College London discussed the mechanistic role SARM1 gene mutations play in the development and progression of ALS. [WATCH TIME: 3 minutes]

As scientific researchers continue to uncover new genetic links to amyotrophic lateral sclerosis, the rise of gene therapies to treat the neuromuscular disease will remain a development to watch in the coming years.

In this episode of Connecting ALS, Dave R. Zook, JD, an advisor with expertise in federal regulatory policy, speaks to the process of making drug coverage decisions for newly approved therapies.

With a burst of activity in recent months, the pipeline of development for amyotrophic lateral sclerosis has proven to be a miniature likeness of the wider progress being made in the care and management of neuromuscular disorders.

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]

The president and chief executive officer of The ALS Association provided insight on the availability of genetic testing for ALS and the organization’s efforts to increase access for the future. [WATCH TIME: 2 minutes]

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]

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]

The president and chief executive officer of The ALS Association provided commentary on the most pertinent issues with managing patients with ALS and the ways to improve current treatment standards. [WATCH TIME: 4 minutes]

The president and chief executive officer of The ALS Association provided insight on how the organization is advancing the therapeutic pipeline of ALS agents for the foreseeable future. [WATCH TIME: 3 minutes]

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]

In recognition of Rare Disease Day, the NeurologyLive® team offered an extensive update on the state of care and treatment for a wide range of rare neurological diseases, including Kleine-Levin syndrome, amyotrophic lateral sclerosis, cerebral palsy, Lennox-Gastaut syndrome, and more.

Ellie Harrington, lecturer in genetic counseling, provides answers for patients with ALS who might be unfamiliar with genetic testing and counseling.

The organization called attention to unintended harms of the current Medicare benefit structure and the need for the Center for Medicare & Medicaid Services to be more “patient-focused” in its assessments.

The combination drug of sodium phenylbutyrate–taurursodiol has been shown to functional decline in patients with amyotrophic lateral sclerosis compared with placebo in the phase 2/3 CENTAUR trial.