The ALS Association is committed to helping improve clinical trial design, in order to increase trial efficiency that will more quickly lead to effective therapeutics. We awarded Dr. David Ennist and colleagues at Origent Data Sciences, Inc. two grants to support research exploring how machine learning algorithms, a type of computational tool, can optimize clinical trial design. Dr. Ennist’s work, recently published in the journal Annals of Clinical Trial and Translational Neurology, looks closely at optimizing patient randomization into clinical trials.

Held March 20-21, the annual ALS Advocacy Fly-In was very successful, as The ALS Association’s executives, staff, and board members acted boldly to fight for a cure for ALS. On March 20, Fly-In attendees heard presentations from numerous speakers, including Mark Vieth from CRD Associates, Dr. Steve Landers from the Visiting Nurse Association Health Group, Inc., and leaders from The ALS Association’s Iowa and Greater Philadelphia chapters.

On December 7, 2017, Calaneet Balas began her role as president and CEO for The ALS Association. This article is the first in a new monthly blog series called "Calaneet’s Corner." Each column will provide you with a mission update and let you hear directly from Calaneet. Our first column goes behind the scenes to get to know Calaneet.

UPDATE: As of March 14, 2019, enrollment for the CENTAUR Phase II clinical trial has been completed. The CENTAUR phase II clinical drug trial, sponsored by Amylyx Pharmaceuticals and funded by ALS Ice Bucket Challenge donations, began an open-label extension, giving people with ALS who completed their trial period an opportunity to continue taking the drug, AMX0035.

People living with ALS eventually lose the ability to speak. That means that preserving channels of communication is an important component of enhancing quality of life. The ALS Association - DC/MD/VA Chapter took this to heart when they initiated The Esther Lerner Brenner ALS Assistive Technology Lab in Maryland, which is designed to help people living with ALS communicate effectively for as long as possible.

The ALS Association is happy to continue our tradition of supporting bright, young scientists in ALS research through our Milton Safenowitz Postdoctoral Fellowship Program. These awards encourage young scientists to enter and, importantly, to remain in the ALS field. Today, we sit down with Dr. Yue Li from Scripps Research Institute – Florida to learn about his important research project studying how specific RNA-protein interactions contribute to ALS disease.

The ALS Association is happy to continue our tradition of supporting bright, young scientists in ALS research through our Milton Safenowitz Postdoctoral Fellowship Program. These awards encourage young scientists to enter and, importantly, to remain in the ALS field. Today, we sit down with Dr. Meredith Corley from the University of California, San Diego to learn about her unique research project studying how specific RNA-protein interactions contribute to ALS disease.

We sat down with Dr. John Landers, professor of Neurology at the University of Massachusetts Medical School, to discuss the recent discovery of the newest ALS gene, KIF5A, made possible by The ALS Association funding through ALS Ice Bucket Challenge donations. Dr. Landers is the co-leader of the U.S. arm of Project MinE, which is the largest ALS whole-genome sequencing effort of its kind. The discovery findings were published in the journal Neuron.

Our beloved daughter, Carmen Schentrup, was taken from us on February 14, one of 17 victims of the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla. Her life was cut too short. For the last month, we have tried to make sense of the senseless, and we have grieved with the other families.

Researchers funded by The ALS Association using state-of-the-art technology called an Organ-Chip, which essentially recreates human biology on a microchip, found that the human brain’s tiniest blood vessels can initiate spinal motor neuron development. Studies using this technology to track living tissues on a chip provide ALS researchers a unique way to study the disease processes in ALS and other neurodegenerative disorders.

A new ALS gene discovery – KIF5A - funded by The ALS Association, with money raised through the ALS Ice Bucket Challenge, will help drive new discoveries and fuel the ALS treatment pipeline.

The ALS Association fights for people with ALS every day, leading cutting-edge research to discover treatments and a cure for ALS, and serving, advocating for, and empowering people with the disease to live their lives to the fullest. In honor of Throwback Thursday, let’s look back at the advances in our mission areas of Advocacy, Care Services, and Research during 2017.

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.