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Cyclists from Spain take on Death Valley Ride to Cure ALS

April 22, 2024 Comments Off on Cyclists from Spain take on Death Valley Ride to Cure ALS

A group of 20 cyclists from Spain took on the challenge of riding 400 miles in the Death Valley Ride to Cure ALS. One of the riders has lived with ALS, also known as Lou Gehrig’s Disease, for eight years.

Celebrating 10 years of impact

April 5, 2024 Comments Off on Celebrating 10 years of impact

“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 ALS Network (formerly the ALS Association Golden West Chapter) proudly celebrates a decade of progress at the 10th annual Jim Tracy 5K, Walk & Roll…

New ALS Research and Moonshot Era

April 4, 2024 Comments Off on New ALS Research and Moonshot Era

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 committee, is advocating a change in the way drugs are developed for ALS and similar diseases. To accelerate the discovery process, he’s advocating for funding…

ALS Network Statement – Discontinuation of Relyvrio

April 4, 2024 Comments Off on ALS Network Statement – Discontinuation of Relyvrio

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 and will publish the results of the trial in a medical journal.  Amylyx will now offer the drug for free to current patients on therapy…

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

March 31, 2024 Comments Off on Tiene ELA y atravesará el desierto del Valle de la Muerte en bicicleta: la inspiradora historia de Jaime Lafita

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 de su condición, el hombre busca atravesar el desierto californiano del Valle de la Muerte en bicicleta. Jaime Lafita was diagnosed with Amyotrophic Lateral Sclerosis…

Spotlight on Erin Merritt

March 30, 2024 Comments Off on Spotlight on Erin Merritt

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 22. In 1998, at 28, Erin founded Woman’s Will, San Francisco’s all-female Shakespeare company, to create equitable opportunities and advance the careers of women in…

Mechanisms of ALS Medications

March 29, 2024 Comments Off on Mechanisms of ALS Medications

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 ALS Association Golden West Chapter) ASK ME educational webinar, “ALS Research and Care in 2024.”  Dr. Goslinga provided an overview of the processes that cause…

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 Comments Off on 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

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 siempre allá donde se proponga, aunque sea auxiliado por un andador. Una actitud de la que ha hecho gala desde 2016, cuando fue diagnosticado de…

Failure of ALS drug puts a spotlight on controversial FDA approvals

March 16, 2024 Comments Off on Failure of ALS drug puts a spotlight on controversial FDA approvals

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 flexible approach in recent years to approve drugs for particularly devastating conditions. (Jason Reed/Reuters) Justin Klee and Josh Cohen had pulled off an improbable success,…

Celebrate women who are trailblazers in our ALS community!

March 15, 2024 Comments Off on Celebrate women who are trailblazers in our ALS community!

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 declared, in perpetuity, that March be designated to honor and recognize the contributions of women to history, culture, and society. Throughout this month, we invite…