Month: March 2024

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…

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…

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…

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…

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…

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…

Benioffs donate $150M to Hilo and Straub medical centers

March 5, 2024 Comments Off on Benioffs donate $150M to Hilo and Straub medical centers

Marc and Lynne Benioff are donating $150 million to two Hawaiʻi hospitals to help ensure continuous health care access in the state, according to a news release Tuesday. The gift…

ALS organizations collaborate, advocate for FY25 Congressional funding

March 5, 2024 Comments Off on ALS organizations collaborate, advocate for FY25 Congressional funding

The Honorable Patty MurrayChairSenate Committee on AppropriationsS-128 The CapitolWashington, DC 20510 The Honorable Kay GrangerChairHouse Committee on AppropriationsH-307 The CapitolWashington, DC 20515 The Honorable Susan CollinsVice ChairSenate Committee on AppropriationsS-128…

March 2024 | Monthly eNewsletter from ALS Network

March 4, 2024 Comments Off on March 2024 | Monthly eNewsletter from ALS Network

Our March eNewsletter is in your inbox now or you can view it online! This month, we celebrate Women’s History Month and honor the many amazing women who are making…