Researchers from collaborative initiatives funded by The ALS Association, with money raised through the ALS Ice Bucket Challenge, announced the discovery of a new ALS gene, KIF5A, which will help drive new discoveries and fuel the ALS treatment pipeline.

We recently sat down with Dr. Carlos Castañeda, assistant professor of biology and chemistry at Syracuse University. Thanks to funding from the ALS Ice Bucket Challenge, The ALS Association has funded Dr. Castañeda twice through our global research program, which supported this work.

The ALS Association mourns the loss of Dr. Stephen Hawking and commemorates his life and legacy. Hawking, a renowned physicist and best-selling author who famously studied black holes and whose life was depicted in the 2014 film The Theory of Everything, was diagnosed with ALS, also known as Lou Gehrig’s Disease, in 1963. The average life expectancy of a person living with ALS is approximately two to five years after diagnosis and only 10 percent of people survive for more than 10 years.

I woke up this morning to the terrible news that Stephen Hawking died. While I never met the man, and didn’t really understand all he was saying about black holes, I learned a lot from him about what is possible for people with ALS.

Research funded with donations from the ALS Ice Bucket Challenge recently uncovered evidence that promoting an increase in a specific immune cell in the brain and spinal cord of a mouse with ALS was associated with increased motor function, pointing to a potential treatment in the future.

Central nervous system (CNS) disorders afflict approximately 300 million people worldwide. They often span many years and are severely debilitating. And, in addition to the personal cost to patients and families, the economic burden reaches an estimated $1.5 trillion annually in the U.S.

This guest post is from Shelly Hoover, EdD, a member of the Patient & Caregiver Advisory Committee, and does not necessarily reflect the opinions of the Association staff, its Board of Trustees, or its chapters.

The ALS Association, in partnership with the Motor Neurone Disease Association (MND Association), and the ALS Society of Canada, have come together to support the ALS Reproducible Antibody Platform (ALS-RAP) with a $600,000 grant to create an open-access pipeline to validate antibody research. ALS-RAP will provide the ALS research community with the highest quality reliable, renewable antibodies for ALS genes to galvanize and enable a faster and even more efficient development of therapies to address the ALS challenge, globally.

Did you know we have been using telemedicine since the 1960s? Neil Armstrong and his fellow astronauts wore medical monitoring devices developed by NASA during their first moon landing in 1969. Since then, the use of telemedicine has exploded. Over half of all U.S. hospitals now use some form of telemedicine through more than 200 telemedicine networks.

Dr. Gene Yeo from the University of California San Diego recently published a paper in the journal Cell, describing his important work uncovering the role of stress granules (SGs) in ALS. His research is supported by The ALS Association Investigator-Initiated Grant program, with donations from the ALS Ice Bucket Challenge. We sat down with Dr. Yeo to hear how he and his team identified SG components that they found vary by stress and cell-type.

Each spring, hundreds of ALS Advocates from across the U.S. unite in Washington, D.C., to learn about the latest ALS research, network with each other, and visit Capitol Hill to share their stories with members of Congress and advocate for research and access to care.

(This is the first article in a five-part series highlighting the 2018 recipients of The ALS Association Heroes of Hope Awards.) Mike Maloney is one of the reasons we provide care services to people living with ALS, advocate for legislation that greatly impacts the quality of life of those living with the disease, and fund research toward treatments and a cure for ALS.

On February 12, 2018, the FDA announced its DRAFT Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment - Guidance for Industry. A copy of FDA’s draft guidance can be found here.

As the dust settles on the passage of the new tax law, you may be wondering how it will affect your charitable giving. Supporters of The ALS Association give for a variety of reasons, but the added benefit for many donors is the ability to take charitable deductions if they itemize deductions on their tax returns. The new tax law will affect everyone differently, and many people are still working through what it may mean for their personal situation.

The Hollywood Reporter recently published a great article about new discoveries toward a cure for ALS, thanks to contributions and support from Nanci Ryder, veteran talent publicist, and her friends and supporters. Nanci has bravely fought ALS since 2014 and has enlisted the support of such stars as Courteney Cox, Don Diamont, and Renee Zellweger.

Researchers funded through The ALS Association's Lawrence and Isabel Barnett Drug Development Program uncovered a new way to prevent muscle paralysis in an ALS mouse model. Dr. Steven Burden at New York University Medical School and colleagues at Columbia University Medical School used a stimulatory antibody to increase the activity of MuSK, a protein critical for maintaining the connections between muscle and motor neurons.

UPDATE: As of March 14, 2019, enrollment for the CENTAUR Phase II clinical trial has been completed. At the recent Leadership Conference for The ALS Association, Joshua Cohen and Justin Klee, CEO and president, respectively, and founders of Amylyx Pharmaceuticals, updated us on their ongoing CENTAUR phase II clinical trial. The Association is supporting their trial through ALS Ice Bucket Challenge donations, with a $2.96 million grant in partnership with ALS Finding a Cure.

For this Throwback Thursday, we’re taking it back to February 10, 2017. The article was titled, “Nuedexta Trial Demonstrates Promising Results Impacting Bulbar Function in ALS Patients.”

Research funded by The ALS Association using Ice Bucket Challenge donations recently led to a significant discovery in understanding a disease pathway behind the most frequent cause of inherited ALS and frontotemporal dementia (FTD).

The Steve Gleason Enduring Voices Act is now law! This morning, President Trump signed the Bipartisan Budget Act of 2018 (H.R. 1892), which included the Steve Gleason Enduring Voices Act. The Act will permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases.