At The ALS Association, we’re working tirelessly toward a future where ALL people with ALS have access to effective treatments and care. A future where no family has to face the physical and emotional burdens of ALS alone. And we will do whatever it takes to ensure people with ALS are empowered to live their lives as they want and to eliminate or reduce the physical, emotional, and financial burdens of living with the disease until a cure is found.
ALS takes nearly everything from individuals diagnosed with the disease and their families. We all have to do whatever it takes to stop it. Together, we can end ALS.
Your generous support allows The ALS Association to fund millions of dollars in research every year in locations across the globe. The first half of the year saw some important developments in the search for new treatments and a cure.
- New long-term analysis published in the Journal of Neurology, Neurosurgery & Psychiatry showed that the drug AMX0035 was effective at reducing a variety of harms associated with ALS. AMX0035 was one of the first treatments funded with money raised during the ALS Ice Bucket Challenge.
- The FDA approved an oral formulation of the drug edaravone, which will allow for greater ease of use and makes the drug accessible to more people.
- Newly published data showed that earlier intervention with the antisense drug tofersen could be effective at slowing disease progression.
Our research portfolio funds the drug development pipeline from exploratory research to clinical trials, while also expanding the field of ALS research. We currently provide funding for 135 active research projects in 11 countries including the United States.
So far this year we have announced:
- Funding of $2.94 million for six research projects through the Lawrence & Isabel Barnett Drug Development Program, a program that has historically attracted a sixfold increase in follow-on funding from outside funders like pharmaceutical companies and venture capitalists.
- Grants totaling $525,000 to fund four projects through our Milton Safenowitz Postdoctoral Fellowship Program which supports the development of new scientists in the field of ALS research.
- A new seed grant program which provides researchers an opportunity to apply for one-year awards of up to $50,000 to fund research projects gathering preliminary data that can in turn be used to justify larger grants as the research progresses.
- A $400,000 award in collaboration with ALS Finding a Cure to support research into the role SARM1 gene mutations play in the development and progression of ALS, with the ultimate goal of using an improved understanding of SARM1 to develop new treatments.
While we search for the answers to ALS, we are committed to supporting individuals battling this disease with access to specialized ALS health care as well as information, resources and educational materials to navigate the challenges ALS brings.
- The Association’s clinic network continues to grow, providing evidence-based multidisciplinary care to people living with ALS throughout the US. Two new clinics have received the designation as ALS Association Certified Treatment Centers of Excellence since the beginning of the year, with more than 25 clinics in process toward achieving their formal designation.
- The ALS Association and National Veteran’s Health Administration formal partnership, established in 2021, continues to evolve with more VA clinics moving toward formal designation to serve our veterans with the highest standard of care.
- So far this year, 244 people attended live webinars, with 1,072 visitors viewing the recorded presentations, covering a wide range of topics including nutrition, mobility and genetic testing for people living with ALS.
- In order to help people with ALS remain safe and independent, we created 11 new video resources to address changes in mobility while living with ALS in a home environment.
The ALS Association, together with ALS advocates from across the country, has been instrumental in passing legislation to advance ALS-specific research and to ensure that people living with ALS have access to the health care they need and deserve. So far this year, people living with ALS, their families and communities have delivered more than 16,000 messages to Congress and hosted more than 500 virtual meetings with lawmakers.
In addition to helping lead the fight for increased federal funding for ALS research and continued expanded access to telehealth, we have helped to empower the ALS community to encourage the FDA to approve AMX0035, a treatment shown to be safe and effective at extending life and slowing disease progression. In March, we filed public comments with the FDA advisory committee regarding Amylyx Pharmaceutical’s new drug application for AMX0035, urging the agency to approve the application now.
- Association leadership and ALS community advocates testified before the advisory committee, imploring them to approve AMX0035. After the advisory committee narrowly voted against approving AMX0035, The ALS Association circulated a letter signed by several dozen leading ALS clinicians telling the FDA that they want to be able to discuss AMX0035 with their patients as a viable treatment option for ALS.
- Through our advocacy action center, more than 9,000 people with ALS and their loved ones emailed the FDA urging them to approve AMX0035 as soon as possible. The FDA has extended its review of AMX0035 by an additional three months, with a decision expected in September.
- When the Institute of Clinical and Economic Review, an industry stakeholder group commonly known as ICER, announced that it would be reviewing two ALS drugs, we immediately alerted the community to the fact that the organization’s review process – which can be used to erect barriers to access drugs once they are approved – has been labeled discriminatory by the National Council on Disabilities. We have gathered more than 2,000 signatures on a petition calling on health care payers not to use the group’s flawed analysis. We subsequently filed formal objections to ICER’s draft analysis, pointing out that it relies on quality-of-life data that discriminates against people with disabilities, it lacks real-world data on the medical costs of living with ALS in the United States, and it fails to account for the heterogeneity in the ALS community.
Read more about our public policy priorities.
Our nationwide network of chapters continues to further our mission by expanding the reach of care services and multidisciplinary care support, advocating on state policy matters, and creating unique and inclusive ways for the community to get involved in the fight against ALS. These efforts provide vital support, resources, and care programs to help people impacted by ALS and their families.
- Working with the Minnesota Legislature and Senator David J. Tomassoni, who is currently living with ALS, The ALS Association Minnesota/North Dakota/South Dakota Chapter secured $25M for ALS research and caregiver support through the largest single state grant designated toward finding a cure for ALS.
- The Northern New England Chapter celebrated a win in March when the Vermont Senate passed a bill to establish a Vermont ALS Registry.
- The Massachusetts Chapter coordinated an Ice Bucket Challenge with the Northampton Police and Fire Departments to help raise awareness and funds during ALS Awareness Month.
Sharing stories from the ALS community is key to creating understanding about the impact ALS has on families and generating the support necessary to fight the disease. Recently, internationally acclaimed celebrity hairstylist and entrepreneur, Ken Paves, allowed cameras into his home to film a nationwide public service announcement to bring hope and support to those living with ALS and inspire the public to join the fight against the disease. Ken, who was a caregiver to his mother, Helen, shared personal insights about their amazing relationship and ALS journey.
"When I look at her and when I see what ALS has taken away from her, it makes me realize even more what it could never take away from her, and that's her spirit, her inner beauty and her strength," he said.
Receiving more than 5,000+ airings in the first 6 weeks, the PSA continues to air in markets across the country.
None of these advancements would be possible without the generous support of our donors, partners and the families we serve. To learn more about the work of The ALS Association and how you can get involved today, visit als.org.
