The first step to discovering the breakthroughs that will make ALS a livable disease is a single experiment. That’s the core belief that drives our Seed Grant Program. This program provides researchers with the initial investment needed to see if their innovative ideas have the potential to grow into projects that can transform ALS treatment and care.
While ALS may be statistically uncommon and is considered a rare disease, today, on Rare Disease Day we recognize and honor the 350 million people worldwide who are affected by rare diseases.
For individuals living with ALS and their caregivers, navigating health insurance can feel like a maze full of obstacles, delays, and unexpected roadblocks. From understanding coverage options to managing denials and appeals, the process can be overwhelming and daunting, especially when the focus and precious time should be focused on spending time with loved ones and making memories, not fighting insurance companies for coverage.
As recent advances in ALS treatment show promise in slowing progression, improving function, and helping people live longer, the need to recognize and diagnose ALS earlier has never been more critical.
Lee Wilson, at just 29 years old, faces challenges that no one her age should have to confront. While she and her husband dream of starting a family, Lee is also making end-of-life plans.
Today marks the 10th annual International Day of Women and Girls in Science, which serves as an opportunity to recognize the contributions of women to advancements in science, technology, engineering, and mathematics. This year, we are shining a spotlight on Alyssa Coyne, Ph.D., an assistant professor of neurology at Johns Hopkins University, and how she is accelerating the development of new ALS treatments.
Sharing your ALS story has the power to educate others, inspire hope, and remind those facing similar challenges that they are not alone. Please continue sharing your stories with us.
Many people in the ALS community have shared their personal stories with us, including Sandy, who shared how her cousin Debbie who is living with ALS has been—and remains—her inspiration.
When Rob Eichler was just a teenager, his father created something of enormous significance for the ALS community—a groundbreaking augmentative communication device. Years later, that device would take on intensely personal meaning for Rob when he learned he had ALS.
Participating in ALS research is a powerful way to help advance new treatments, improve care, and bring us closer to a cure. If you’ve ever thought about participating in research or are just hearing about it for the first time, we hope you will join us for Clinical Research Week, a weeklong series of free webinars happening daily from January 27 to January 31.
Navigating an ALS diagnosis is daunting enough without the added challenges of health insurance denials and appeals. For Chris, the journey to accessing critical medication sheds light on the obstacles many in the #ALS community face and serves as a beacon of hope for those in similar situations.
We are thrilled to announce the second annual ALS Nexus will be happening August 11–14, 2025, at the Gaylord Texan Resort and Convention Center in Grapevine, Texas, just outside Dallas. Building on the inspiring conversations and groundbreaking collaborations from last year, ALS Nexus 2025 promises to be even more impactful.
Evidence is emerging that not only is functional improvement possible, it’s happening for some people with SOD1-ALS who have been treated with Qalsody® (tofersen).
Tara Warren was looking for a way to connect her passion for endurance racing and the fight to end ALS to honor her mom who passed away from the disease. Four grueling races and 400 miles later, she did just that.
Whether you're living with ALS, a caregiver, or a loved one, your story holds the potential to illuminate the realities of this disease, break down misconceptions, and offer a sense of solidarity to others navigating similar day-to-day challenges. Here are just a few stories we’ve recently shared.
The ALS Association has awarded five new grants through our Lawrence and Isabel Barnett Drug Development Program. These grants—totaling $2.2 million dollars over the next two years—will support the continued preclinical development of five emerging ALS therapies in preparation for clinical testing.
As 2024 comes to a close, we remain energized by the gains made for people living with ALS, their families and caregivers, and are excited about 2025 and even more progress. Here are the top ten blogs you've enjoyed the most.
Pete Frates didn't wallow in his ALS diagnosis. Instead, he quickly turned his focus toward advocacy and raising awareness about the disease. His determination became the driving force behind what would eventually become the ALS Ice Bucket Challenge, the social media phenomenon that would change the course of ALS forever.
Across our mission, we’ve witnessed incredible strides in the fight against ALS in 2024. We’re excited to share some of the impactful achievements we’ve made this past year, all thanks to your support.
