How the ice bucket challenge 10 years ago revolutionized ALS research

AUSTIN (KXAN) — In the summer of 2014, more than 17 million people dumped ice cold water over their heads in an online trend known as the ice bucket challenge. The virtual challenge gained global momentum, raising more than $115 million for the ALS Association to support research and care access for those living with Amyotrophic lateral sclerosis (ALS).

In the decade since, that trend paved the way for advanced funding commitments into research, drug therapy development and clinical access in the United States and beyond. More than $154 million has since been committed to aid over 550 projects in the United States and 18 other countries, per the ALS Association. The Federal Drug Administration also approved two additional treatment options for ALS: Radicava in 2017 and Qalsody in 2023, the ALS Association added.

Beyond ramping up dedicated funds toward drug development and research, Austin neurologists told KXAN the challenge also amplified public awareness surrounding the disease.

"I think the ice bucket challenge has really done wonders for the world of ALS," Dr. Hannah Machemehl, an Austin-based neuromuscular neurologist, said. "It brought ALS to the forefront of a lot of people's minds who weren't familiar with the disease beforehand...and with that, there's been a lot of advancements both because of increased awareness of the disease and increased availability for funding — to fund different access to therapies, access to treatments, access to different advocacy programs and even more beyond that."

Machemehl works as part of a multidisciplinary team at an ALS clinic, where patients diagnosed with ALS can receive electrical and genetic testing, physical exams, lab work or undergo different treatment options. As a result of the ice bucket challenge and increased public awareness in recent years, she said it appears patients are getting diagnosed more quickly after the onset of symptoms, allowing them to expedite the start of treatment.

"There's a great deal of research that's going on — some of it's through clinical trials, other through biomarker studies to try to understand the disease process itself, so we can attack the underlying cause," Machemehl said. "We've had new FDA-approved therapies to help slow down the progress of ALS since the advent of the ice bucket challenge. And we've really come a long way in just understanding the value of implementing disciplinary care and access to the different testing to lead to diagnosis, especially as it relates to the small subset of people [where] ALS runs in their family."

Austin resident Carrie George is one of those patients with a rare hereditary form of ALS, and is participating in clinical research trials to help specialists study the hereditary version. Approximately 5% to 10% of all people living with ALS in the United States have family members who'd been diagnosed with the disease, with it likely an inherited genetic mutation.

George was diagnosed with ALS on Dec. 28, 2023. She said she was "completely bamboozled" by the diagnosis and recognized the value of community support from family, friends, loved ones and ALS professionals.

"[Their support has] been everything. It's been everything to me," she said. "There's always someone available if I need to talk. They've created more outings for all of us, they get me out of the house more. So it's been a huge difference."

Right now, she sees her team at the Austin Neuromuscular Center every three months or so to visit with a nutritionist, respiratory therapist, physical and therapists and assistive technology representatives.

Working with the ALS Association, she was able to access a local equipment loan program to receive a wheelchair, upright walker and other health resources. It's been beneficial having access to those, she said, as her symptom progression has weakened her arms and hands, making walking more challenging.

This July, George will attend the ALS Nexus Conference in Dallas alongside her friend Karen Shively, who's coming in from Singapore to support George at the event. Even from across the world, George said Shively has been one of the many support systems guiding her through his diagnosis.

"I'm in it for the long haul," she said.

The ALS Association operates a Texas chapter with resources and support groups for those living with ALS as well as their caregivers and loved ones. More details on the organization are available online.