ALS Ice Bucket Challenge Year-End Update: Over $94 Million in Commitments Since 2014

In the summer of 2014, the ALS Ice Bucket Challenge inspired 17 million people to upload videos and raised $115 million for The ALS Association. Since then, The ALS Association has committed more than $94 million toward its mission, including over $82 million to fund research and helped forge nine new global research collaborations.

“The Ice Bucket Challenge was a global phenomenon, thanks to the generosity of millions of people, resulting in a tremendous amount of awareness of the disease and spurring a huge increase in our research spending,” said Calaneet Balas, president and CEO of The ALS Association. “Since 2014, we’ve committed over $82 million to fund diverse, cutting-edge research, including over 150 projects in the last year alone. By its nature and design, research requires time, and people with ALS don’t have a lot of time. But we’ve seen exciting breakthroughs from the research we fund – including some that were considered high-risk.”

ALS Ice Bucket Challenge donations have helped lead to the discovery of four new ALS genes, including NEK1, one of the most common. In addition, scientists who are a part of the Neuro Collaborative, which was started with an initial investment of $5 million from ALS Ice Bucket donations, have developed antisense drugs targeting two of the most common ALS genes, C9orf72 and SOD1. Our investment in this innovative technology also translates to other neurodegenerative diseases, making the impact of Ice Bucket donations even greater.

ALS Ice Bucket Challenge donations have also helped spur advancements in assistive technology to develop flexible, accessible devices to help people living with ALS better communicate to improve their quality of life. ALS Ice Bucket Challenge donations have also helped us increase the number of Certified and Recognized Treatment Centers of Excellence and the size of the grants to those centers. Prior to the Ice Bucket Challenge, we 34 Certified Treatment Centers of Excellence and there were no plans to increase that number. Today, we have 58 Certified centers, in addition to 20 Recognized Treatment Centers. (The primary difference between Certified and Recognized Treatment Centers is that Certified Centers conduct ALS research.)

To see our research accomplishments and highlights for the past year (2017), please click here. To see a specific list of all the projects and project descriptions we have funded since the Ice Bucket Challenge, please click here.

“We fight for treatments and a cure for ALS every single day,” Balas said. “We are the largest private funder of ALS research and are currently funding research projects in eight countries. We are also helping ensure people with ALS receive multidisciplinary care that we know enhances and extends life. And we’re amplifying the voices of more than 16,000 ALS advocates to push for better public policies that can help us fight for treatments and a cure.”

The ALS Association is committed to transparency in how donor dollars are fueling efforts to find treatments and a cure for the disease. And we’re committed to maximizing all donations from the ALS Ice Bucket Challenge and beyond.

Every Discovery

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By Lucie Bruijn, Ph.D., MBA

People often ask me what is the most exciting thing going on right now in ALS research. With so many exciting new projects, especially since the ALS Ice Bucket Challenge infused millions into the pipeline, it’s difficult to pick just one area – they’re all exciting!

Right now, the development of formulas that speed up clinical trial are encouraging. Advancements in induced pluripotent stem cell (iPSC) technology which models a person’s genetics in a dish show promise. And big data efforts aimed at discovering new genes and disease pathways are speeding our way to a treatment.

But, if I had to choose one area I am most excited about, it would be…

Biomarkers

Currently, the only way to diagnose ALS is to rule out other diseases. In many cases, people endure an excruciating 12-18 months of tests and waiting for answers as their condition deteriorates.

If scientists could identify an ALS biomarker – a measurable indicator, like a chemical change in the blood or structural changes in the brain – it would not only expedite diagnosis, but also enable doctors to track disease progression and patients’ responses to drugs in trial.

Since the ALS Ice Bucket Challenge, your support has enabled tremendous investment in biomarker research. In fact, one study in Arizona is currently validating a cerebral spinal fluid and plasma biomarker and other biomarkers are in development.

Every discovery in ALS research – successes and dead-ends – are clues that add up to a better understanding of the ALS disease process.

Continued research in this area is critical, and scientists need your support now more than ever. Please consider making your generous contribution today.

Top Researchers Call for Development of Biomarker Consortium to Speed Development of ALS Treatments

research news banner 2015Collaborative Review Published in Leading Scientific Journal

Washington, D.C., (January 12, 2016) — A review supported by The ALS Association titled “ALS Biomarkers for Therapy Development: State of the Field and Future Directions,” authored by leading experts in the field of amyotrophic lateral sclerosis (ALS), was recently published in in the journal Muscle & Nerve. The review provides an overview of the state of the development of biomarkers, which are used to track disease progression, and calls for the formation of an ALS Biomarker Consortium to coordinate efforts among all stakeholders in an effort to speed progress toward finding effective treatments for people living with ALS.

Continue reading Top Researchers Call for Development of Biomarker Consortium to Speed Development of ALS Treatments