Association Sets Goal of Making ALS ‘Livable’ by 2030

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by Mary Chapman |

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ALS Association goals

With a heightened emphasis on clinical trials, improved care, and identification of risk factors, the ALS Association has created a plan intended to make amyotrophic lateral sclerosis (ALS) “livable” by 2030.

While it continues to search for an ALS cure, the nation’s largest ALS nonprofit organization believes that, within a decade, patients will live longer and better, and that some individuals thought to be at higher risk will be prevented from developing the progressive neurodegenerative disorder.

The organization’s plan, which seeks to end the disease’s fatal nature, includes more clinical trials and focused research, improved care and assistive technology, identification of risk factors, earlier administration of treatments, and the discovery of preventive therapies.

“This is the first time the ALS community has been able to articulate a workable plan to fundamentally change the course of this disease,” Jinsy Andrews, MD, associate professor of neurology at Columbia University’s Eleanor and Lou Gehrig ALS Center, said in a press release.

“This is an audacious and challenging goal, but people with ALS deserve no less. If we are focused, and can expand research and access to high-quality care the way we need to, we can make this happen,” added Andrews, also an ALS Association board member.

ALS patients, who have few treatment options, live an average of three to five years after diagnosis, according to the organization. Typically, respiratory failure is the cause of death.

“A critical part of making ALS livable means finding new treatments and cures, and we need to speed and scale up the ALS research process so they are developed soon enough to help people living with ALS now,” said Calaneet Balas, president and CEO of the ALS Association. “Making ALS livable also means improving the care we are delivering and thinking about how to prevent ALS and its associated harms, which will help people with ALS and their loved ones.”

She added: “Seven years ago, some amazing people with ALS inspired us all to do the Ice Bucket Challenge and made the world aware of ALS. That outpouring of support for people with ALS has enabled us to now take the next step and lead the process of transforming ALS from being a fatal disease into a livable one.”

The 2014 Ice Bucket Challenge generated more than $115 million for the organization and significantly bolstered the fight against ALS. Since then, the ALS Association has pledged some $113 million to research and is supporting 166 projects in 13 countries.

The organization plans to host a virtual meeting with the U.S. Food and Drug Administration (FDA) during which patients will express their urgent need for new treatment candidates that can help with everyday life, and explain what life is like with ALS.

One way to make ALS livable is to produce a trove of moderately effective therapies while the search for a cure continues, the organization said.

Late last year, the ALS Association asked the FDA to approve the prospective treatment AMX0035 as quickly as possible, based on highly promising Phase 2 clinical trial data. However, the agency requested data from an additional Phase 3 study, which Amylyx is planning for later this year with up to 600 patients and sites across the U.S. and Europe.

“The work the ALS Association is doing to find new treatments and cures and improve care will benefit those of us living with ALS now,” said board member Larry Falivena, who was diagnosed with ALS in 2017.

“It will mean that people diagnosed in the future will no longer have to live with the same physical, emotional, and financial burdens as those of us living with ALS now,” he added. “I want to see my boys grow up, and I think this is the best chance for me, and many others like me, to make that happen.”