News & Stories

Our News & Stories section serves as a valuable resource for both the ALS community and media professionals to receive timely updates about ALS, our community, and the ALS Network.

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Celebrating 10 years of impact

April 5, 2024

“In my mind is, everyday, to get something done, because I don’t know where that finish line is but I’m moving towards it, slowly but surely.” – Jim Tracy  The…

New ALS Research and Moonshot Era

April 4, 2024

A trailblazer in the field of ALS research and therapy development, Richard Smith, MD, director of the Center for Neurologic Study, and a member of the ALS Network’s scientific review…

ALS Network Statement – Discontinuation of Relyvrio

April 4, 2024

Amylyx has announced the discontinuation of Relyvrio due to the PHOENIX trial’s failure to meet primary and secondary endpoints. They will present their learnings from the trial at upcoming meetings…

Tiene ELA y atravesará el desierto del Valle de la Muerte en bicicleta: la inspiradora historia de Jaime Lafita

March 31, 2024

Jaime Lafita fue diagnosticado con Esclerosis lateral amiotrófica (ELA), una enfermedad neurodegenerativa progresiva que afecta las células nerviosas y que termina por dejar a los pacientes totalmente paralizados. A pesar…

Spotlight on Erin Merritt

March 30, 2024

At the age of four, Erin Merritt knew that she wanted to work in theatre. She began training at age 15 and made her professional debut as an actor at…

Mechanisms of ALS Medications

March 29, 2024

In January 2024, Jill Ann Goslinga, MD, MPH, Assistant Professor, UCSF Department of Neurology, gave a special presentation about the mechanisms of ALS medications at the ALS Network’s (formerly the…

El reto del español Jaime Lafita: desafiar a la ELA en bicicleta por el Valle de la Muerte | The Challenge of Spanish Jaime Lafita: Fighting ALS by Bicycle Through Death Valley

March 28, 2024

Camina con dificultad, pero eso a él no le importa. El único objetivo de Jaime Lafita, de 61 años y original de Getxo, en el norte de España, es llegar…

Failure of ALS drug puts a spotlight on controversial FDA approvals

March 16, 2024

Critics say the Food and Drug Administration has gone too far greenlighting drugs despite concerns about their effectiveness The FDA headquarters in Silver Spring, Md. The agency has used a…

Celebrate women who are trailblazers in our ALS community!

March 15, 2024

Women’s History Month began as a local celebration in Santa Rosa, California in 1978, in connection with International Women’s Day. The movement spread across the country, and, in 1987, Congress…