Thanks to the support of the ALS community and our generous donors, we have been able to make real progress in the fight against ALS. Below you will find tangible impacts that you – our supporters – have enabled.

Together, we have accomplished a lot in the past year – and we hope you will take a moment to appreciate how far we’ve come. But we also know that ALS is still fatal, and we must urgently work for everyone living with ALS and their loved ones. Building on this progress, we must make ALS livable – and cure it.

Here are some of the highlights and advancements you may have missed this year:

• Accelerating Research and Technology
• Optimizing Current Treatments and Care
• Reducing the Harms of ALS
• Raising Voices, Advocating for Change
• Spreading Awareness and Reasons for Hope

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Advancing ALS research is critical, as every breakthrough deepens our understanding of the disease, improves care, and brings us closer to effective treatments and a cure.

By investing in cutting-edge research and fostering collaboration, we’re turning hope into tangible progress. Thanks to the generosity of our donors and supporters, we are currently supporting 151 active research projects in the United States and 14 other countries.

• To help accelerate drug development and get promising treatments closer to regulatory evaluation, we are investing more than $2.9 million over the next two years through our Lawrence and Isabel Barnett Drug Development Program to help move six emerging ALS therapies from the laboratory into the clinic. We also have committed $1 million through our Hoffman ALS Clinical Trial Awards Program to support a small, early-stage trial of a nasal spray designed to dampen inflammation and potentially slow or stop ALS progression.
   
• We are connecting people with ALS to clinical trial opportunities through our partnership with myTomorrows and improving trial accessibility through our Trial Capacity Awards. Initiatives like these not only help more people who want to participate in clinical trials do so, but also increase the efficiency and speed at which clinical research is conducted.

• We joined with the National Institutes of Health, Food and Drug Administration, and 13 other private partners to help accelerate ALS diagnosis and treatment through the Accelerating Medicines Partnership® in ALS (AMP® ALS). This partnership will create the largest open data platform for ALS research and help enable discovery and development of diagnostic tools, biomarkers, and better treatments. 
   

• Researchers at UC Davis supported by our Seed Grant and Assistive Technology Grant Programs developed a new brain-computer interface that translates brain signals into speech with up to 97% accuracy—the most accurate system of its kind. By combining this technology with AI, one person with ALS who needed others to help interpret for him was able to speak again by just trying to think about what he wanted to say. The words were read aloud by a computer in a voice that was constructed from audio samples of his pre-ALS voice. 
   

• We celebrated 20 years of our Milton Safenowitz Postdoctoral Fellowship Program by welcoming five talented young scientists to the program. It is through programs like this that an exciting trend has emerged in recent years: approximately 80% of applications to our research funding programs now come from early-career or new investigators, including scientists from fields outside traditional ALS research. 
   

• We also launched a new program matching trained volunteers with people living with ALS who would like assistance enrolling and participating in the National ALS Registry, the largest ALS research project ever created. Volunteers virtually help guide people living with ALS through the enrollment process and assist with completing the risk factor surveys in both English and Spanish.  

Learn more about our global research program and the projects we fund.

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We are committed to advancing innovative care solutions, ensuring access to that care, and empowering individuals with the resources they need to navigate their journey with ALS, regardless of their zip code.    

• We expanded our network of ALS multidisciplinary clinics to 232 today, which includes 91 Certified Treatment Centers of Excellence™, 21 Recognized Treatment Centers™, and 120 newly designated partner clinics in 2024.  
   

• Thanks to our partnership with the National Veterans Health Administration, there are now 15 formally designated VA clinics representing 11 of 18 Veteran Integrated Service Networks (VISN) in the US, providing ALS specific multidisciplinary care to veterans.  
   

• We entered into a partnership with Synapticure, a leader in telemedicine focused on improving the lives of people and caregivers living with neurodegenerative diseases, which is helping to expand access to care across the U.S., while improving continuity of care and helping reduce the burdens placed on people with ALS and their families.  

• Early this year we proudly announced the largest single gift in our history from the estate of the late philanthropist Hugh Hoffman. The $58 million gift established The Hugh and Herbert Hoffman ALS Impact Fund, which will profoundly impact the lives of people living with ALS and their loved ones, advancing the ALS Association’s goal of making ALS livable until there is a cure. Thanks to the new fund, from July 1-Nov 18, 100 Hoffman Family Grants were initiated, with 6 applicants for the Clinic Development Awards and 11 for the Clinic Capacity Awards so far. 
   

• Our online resource tool, My ALS Journey, has been accessed by over 8,200 users to date with almost 19,000 views, accessed from almost 240 locations worldwide, providing resources and support for people living with ALS.  
   

• Our Nationwide Connect program has served over 330 people from 33 states providing virtual meetings for caregivers that offer a space where they can find understanding, validations, and support from others who share similar roles and experiences, fostering a sense of camaraderie and connection that can be immensely beneficial.  
   

• Engagement with ALS Care Connection, a private online calendar tool that can be used to support the entire family by organizing volunteers that can help with day-to-day responsibilities for families impacted by ALS has continued to grow. More than 125 new ALS Care Connection Communities were created in over 24 different states with almost 1,900 volunteers supporting ALS families across the country. 
   

• ALS Academy, our online platform for healthcare providers and caregivers, launched in November with 141 users in the first 2 weeks, offering 5 free, on-demand courses and related resources. Designed for all members of the multidisciplinary team and caregivers for people living with ALS, our goal is to assist providers everywhere in their effort to support families impacted by the disease. 

To learn more about our programs and find resources, care, and support in your local area, contact our Care Services team.

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Better understanding the genetics of ALS will help make it easier to identify those at risk, diagnose the disease sooner, and ultimately prevent new cases of ALS altogether. And furthering investments in assistive technologies will help people with ALS live longer and stronger with the disease.  

• We awarded our first  Assistive Technology Grants, which will provide more than $3.1 million to support the development of eight technologies designed to address some of the most common challenges faced by people living with ALS and help maintain or improve their health, independence, and quality of life.  

• New Association-led research published in the peer-reviewed journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration found it takes twice as long for people to receive an ALS diagnosis if they are seen in a general neurology clinic compared to a specialist clinic. But our easy-to-use clinical diagnostic and referral guide for non-ALS specialists, known as thinkALS™, can help reduce this diagnostic delay. 
   

• More than 750 people living with ALS shared their thoughts and perspectives on genetic testing and counseling through our ninth ALS Focus™ Survey. The results will help us better understand why some people decide to get tested and others choose not to and will inform future projects and initiatives. 

• Ensuring people living with ALS and their caregivers are in a safe environment is another key to reducing harms caused by the disease. Our free Virtual Home Modification & Safety Assessment Program received over 600 referrals in 30 states and Washington DC. 

• The National Academies’ Living with ALS released a report  providing a comprehensive road map aimed at making ALS a livable disease within a decade. This significant milestone was driven by ALS advocates and the ALS Association, including securing $1 million in Congressional funding for the study. It provides both short-term and long-term recommendations needed across public, private, and nonprofit sectors to improve the lives of those affected by ALS.  
   

• In collaboration with coalition partners, we conducted meetings and submitted comments to the Centers for Medicare and Medicaid Services aimed to provide patient-centered recommendations for the implementation of the new program under the Inflation Reduction Act (IRA), designed to reduce drug costs and cap out-of-pocket expenses for Medicare beneficiaries. Effective January 1, 2025, out-of-pocket drug costs will be capped at $2,000.  

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This year we took positions and lobbied on over 30 bills that would impact people living with ALS and their loved ones by increasing funding for ALS research, treatment for people with ALS in multidisciplinary clinics, and enhanced care and support. 

As the year is coming to a close, thanks to the help of advocates across the nation and, we helped secure some huge legislative wins for the ALS community in federal advocacy. 

• The Centers for Medicare & Medicaid Services (CMS) recently announced a first-of-its-kind directive requiring Medicare Advantage plans to approve coverage for Qalsody, a treatment for people living with genetic SOD1-ALS. This decision reflects our commitment to ensuring people living with ALS have access to promising ALS treatments without delay. 
   

• The Elizabeth Dole Home Care Act (H.R. 542/S. 141) passed Congress and is now headed to President Biden for signature. This important legislation will significantly improve access to in-home care for veterans living with ALS by raising the current cap on home care costs covered by the Department of Veterans Affairs (VA). Under the new law, the VA will now pay up to 100% of the cost of home care services, matching or exceeding the cost of a nursing home.   

• The Department of Transportation released a rule protecting people who use mobility devices. Too often, travelers arrive to find their wheelchairs damaged or broken. This new rule new improve airline staff training, ensure faster return of delayed devices, and strengthen rights in cases of damage. It’s a huge win for people with ALS and everyone who relies on these devices to travel safely. 

2024 was also another busy and productive year in state advocacy. We’ve taken a position in favor of 492 bills in states across the country, 167 of which have become law, and opposed 16 bills, only one of which has passed.  

• July was an exciting month for state advocacy, as several year-long efforts to secure ALS care service appropriations made it over the finish line in South Carolina, Pennsylvania, Michigan, and Massachusetts totaling almost $3 million (2.9) for ALS care. In addition to appropriations aimed at improving care services, we saw some important steps forward on state-funded ALS research programs as well in New York and Pennsylvania totaling almost $23 million, another huge win for the ALS community. 

• California’s State Assembly passed a bill becoming the 29th state to establish a Rare Disease Advisory Council (RDAC). The RDAC is designed to bring together patients, policymakers, and stakeholders in a collaborative effort to advance research, treatments, and policies that will improve the lives of those impacted by rare diseases, including ALS.  

• Two additional impactful bills also made it over the finish line in Pennsylvania in this second half of the year, as Governor Shapiro signed into law both H.B. 1754 on July 1 and S.B. 739 on July 3. H.B. 1754 requires insurance companies to cover biomarker testing for ALS and other conditions, while S.B. 739 extends and expands the state’s legal infrastructure in support of telemedicine.  

Together, our advocacy makes a powerful impact, creating hope and tangible progress for the ALS community. Join us and register to become an advocate for the ALS community TODAY.

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By sharing stories, educating the public, and amplifying the voices of those living with the disease, we unite people around a common purpose, providing reasons to believe in a future where ALS is a livable disease—and ultimately, a world without ALS. 

Throughout the year, people across the nation came together in powerful displays of solidarity and support for individuals living with ALS and their families at our local events. Nearly 47,000 participants and supporters joined us at more than 170 events, showing the world that no one faces ALS alone. 

From the Walk to Defeat ALS® and CEO Soaks to Rides and marathons, the energy and inspiration generated at these events united communities, amplified awareness, and helped drive critical funding for research, care services, and advocacy, raising almost $20 million in support of our mission.  

The Ice Bucket Challenge, 10 Years Later 

2024 marked the ten-year anniversary of the ALS Ice Bucket Challenge which brought the ALS community together and changed the trajectory of the fight against ALS forever. We launched a campaign to celebrate the anniversary and honor the legacy of Anthony Senerchia, Pete Frates, and Pat Quinn, who started the global sensation in 2014, inspiring over 17 million people around the world to dump ice water on their heads and donate to an ALS organization.  

The Challenge raised awareness of the disease worldwide and raised $115 million to support our mission, funds that were invested in ALS research and care for people living with the disease.  

As part of the initiative, we partnered with an independent organization, RTI International (RTI), to conduct an analysis of the trends over the last ten years in the progress toward a cure, new treatments, and improvements in care and quality of life for people living with ALS, all made possible by the awareness and funds raised around the world from the challenge.  

Here are just a few of the highlights from the RTI report: 

• Over the past 10 years, we have awarded $154.7 million to ALS researchers through 560 projects in the U.S. and 18 other countries, more than doubling the amount we invested in research during the 23 years prior to the Challenge.  

• For every dollar we invest in research, our grantees receive $7 from sources such as the National Institutes of Health, other philanthropic foundations, other federal agencies, and the researchers’ own institutions. That means our nearly $155 million investment grew to close to a billion dollars. 

• According to grantees who participated in a survey conducted by RTI, almost 80% used this money to expand their ALS-focused research programs.  

ALS Nexus: Changing the Future of ALS 

We hosted our inaugural  ALS Nexus conference in July, bringing together members from across the ALS community to connect in a way that’s not been seen before, working and collaborating to change the future of the disease.  

More than 500 people gathered in-person and more than 1,000 attendees participated virtually, including experts in the field of ALS care and research, advocates, and people living with ALS, their families, and caregivers. Sessions, presentations, and discussions centered around the progress made in the last 10 years, looking ahead at what the future might hold in the ALS space. 

Save the date for August 11-14, 2025, at the Gaylord Texan Resort and Convention Center in Grapevine, Texas, just outside of Dallas. Registration is now open!  

Learn more about how you can get involved in the fight against ALS.

None of these advancements would have been possible without the generous support of our donors, partners, and the families we serve. Your unwavering support continues to bring us closer to our goal of making ALS livable for everyone, everywhere, until we can cure it. 
 

Thank you for being the heart of our mission. 

Board of Trustees

We are proud to acknowledge the following members of the Board of Trustees: