It’s going to take all of us, working together, to make ALS a livable disease until a cure is found. It’s going to take researchers, clinicians, and scientists across the globe, urgently collaborating to find new treatments and cures.
It’s going to take people living with ALS, their caregivers, family members and loved ones across the country, impassioned to pursue public policies that ensure ALL people with ALS have access to effective treatments and care.
Which is why this was such an amazing year for the community. When Relyvrio became the first treatment for ALS developed with funding from the ALS Ice Bucket Challenge, it demonstrated the power of one community, working together to create a world without ALS – funding promising ideas, supporting clinical trials and pushing policymakers to act with urgency to make treatments that are safe and effective available for people with ALS.
But there is more work to do. And it’s going to take people like you, joining us in the fight, helping to empower people with ALS to live their lives as they want and eliminate or reduce the physical, emotional, and financial burdens of living with this disease.
The ALS Association is committed in our mission to accelerate global research, nationally and locally advocate for laws and policies that affect the ALS community and provide critical local care to ALL people living with this disease.
Together, we WILL end ALS.
Global Leadership
In December, we hosted leaders in the fight against ALS from around the world at the International Alliance of ALS/MND Associations meeting and the Allied Professionals Forum. Hundreds of researchers, healthcare professionals, clinicians and people with ALS/MND from all over the globe attended either in person or online to hear discussions on progress being made in the worldwide fight to make ALS a livable disease while accelerating the fight for a cure. These presentations included:
- Information on new technologies that increase access to and improve care for people with ALS/MND.
- Programs for young caregivers, increasing clinical trials, and improving participation rates in the ALS/MND Registry.
- How to work within regulatory and government systems to create change for people with ALS/MND.
- Efforts to improve eating-related quality of life and survival for persons with ALS.
You can hear more from this event on our weeklong special podcast series on ConnectingALS.org.
Global Research
As the largest philanthropic funder of ALS research in the world, we rely on your generous support to continue to fund the search for effective treatments and a cure. As of November 1, 2022, we have 121 active projects in 12 countries (including the United States) with $44 million currently committed to research.
This past year, we saw significant advances in access to treatments.
- The FDA approved Relyvrio for the treatment of ALS. After committing $2.2 million toward the development of the drug, we led efforts to push the FDA to act with urgency and flexibility in getting the therapy approved.
- The FDA approved an oral formulation of the drug edaravone, allowing for greater ease of use and making 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. The FDA is scheduled to decide on whether to approve tofersen by April 25, 2023.
The search for effective treatments and a cure did not stop there. Grants awarded this year included:
- $3.6 million to four interventional trials through our new Clinical Trial Awards program, which seeks to stimulate the development of therapeutics for ALS by funding early-stage clinical trials that generate data on important issues like safety, dosing, and biomarkers.
- $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.
- $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 providing 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.
In addition to directly funding ALS research, our 2022 advocacy efforts resulted in additional federal funding and support for ALS research.
- Congress provided $40 million for the ALS Research Program at the Department of Defense and maintained $10 million for the ALS Registry and Biorepository. NIH funding was boosted to $115 million.
- Congressional leaders included nearly $30 million to fund programs created in the ACT for ALS, including an additional $25 million at NIH and $2.5 million at the Food and Drug Administration, and $1 million to support a National Academies of Sciences study that will bring together experts to devise a blueprint to make ALS livable.
- The U.S. Food and Drug Administration awarded $3.7 million to three ALS research projects as part of the implementation of the ACT for ALS.
- The National Academies of Sciences, Engineering, and Medicine (NAS) announced study into accelerating the development of treatments and improving quality of life for people with ALS.
To continue to follow the latest news and updates on ALS research around the world, sign up to receive our monthly online newsletter, Research Matters.
Nationwide Advocacy
Advocates from across the country are pivotal to pursuing public policies that are key to making ALS a livable disease. This year we empowered people living with ALS, their families and communities to deliver more than 16,000 messages to policymakers and hosted more than 500 virtual meetings with lawmakers.
In fact, the approval of AMX0035, now known as Relyvrio, is a testament to the tenacity of advocates in the ALS community.
- Association leadership and ALS community advocates testified before the FDA’s advisory committee, imploring them to approve AMX0035. After the advisory committee narrowly voted against the approval, the Association circulated a letter signed by several dozen leading ALS clinicians telling the FDA 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 14,000 people with ALS and their loved ones emailed the FDA urging them to approve AMX0035 as soon as possible.
- When the FDA Advisory Committee reconvened, we again testified before the committee on the need for urgency. The committee voted unanimously to recommend approving the drug.
- When the Institute of Clinical and Economic Review, an industry stakeholder group commonly known as ICER, announced 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.
But our advocacy efforts didn’t stop there.
- We filed comments urging the U.S. Department of Health and Human Services Office of Civil Rights to recommend the department finalize a proposed rule that would strengthen civil rights protections against discrimination on the basis of disability in federal health care programs.
- We led a fight to increase support for The Justice for ALS Veterans Act. The bill would make sure spouses of veterans who lose their battle with ALS are not denied access to survival benefits they are owed.
State Policy & Advocacy
Together, we have been building a streamlined and impactful state strategy that amplifies advocate voices and drives meaningful change across the Statehouses to make ALS a livable disease by 2030.
In 2022, we took action on 40 bills (14 of which passed), held meetings with state regulators, and successfully advocated for the passage of a ballot measure. More than 175 key stakeholder interactions were logged and planning for 2023 state action days are underway.
With the input of the local staff, and through intentional listening efforts, we’ve crafted a unified state policy agenda – with the top three priorities aligning with federal priorities. We’re heading into 2023 with three policy priorities at top of mind:
- Appropriations for ALS care services, research, and clinics
- Passing legislation to ensure Medigap Plans are available and affordable for people living with ALS under the age of 65
- Securing passage of the Genetic Testing Protection Act (GTPA), which will ban life, long-term care, and disability insurance providers from using genetic testing against you (they can’t deny you or charge you more because you participated in genetic testing or due to your genetic testing results)
Additionally, the team has spent the latter half of 2022 identifying and securing collateral needed to drive our policy priorities forward in the new year. This includes the development of a state policy and advocacy website which goes live at the end of the month! This page will host an interactive map with state profiles (including easy to download PDFs), our State Policy Agenda, and the ALS Advocate Story Share – where advocates can video record or upload audio / written stories about their experiences as advocates or personal stories that will move policymakers on issues like access to medications, Medigap plans, harmful prior authorization delays to medically necessary items like ventilators, and more.
Local Care
The success of the Association’s Care Services program relies on a competent, compassionate, and committed team. We work in communities across the country as one team to optimize care and to make sure everyone with ALS has access to the health care they need so they can live a higher quality of life.
Ensuring ALL people living with ALS have access to critical multidisciplinary care remains an Association priority.
- Three new clinics have received the designation as ALS Association Certified Treatment Centers of Excellence since the beginning of the year, with more than 30 clinics in process toward achieving their formal designation. With the partnership of our data and technology team, we are identifying gaps in care and strategically moving forward to better serve those living with ALS.
- With the help of Pat Dolan, a person living with ALS, and a team of his friends and former colleagues at Esri, we launched The ALS Association Center & Clinic Locator, a new tool to make it easier to locate and access ALS multidisciplinary clinics via city or ZIP code. Since going live in mid-August, the locator tool has been accessed nearly 1,400 times
We continued to find and enhance ways to deliver critical resources to educate and support the ALS community.
- Recognizing people living with ALS require specialized caregiving support to address the complex, everchanging nature of the disease, we launched a free online ALS Caregiver Course to address the ongoing need to support paid caregivers and family caregivers in understanding the physical and emotional impacts of ALS.
- This year, almost 400 people attended live webinars, with just under 2,500 visitors viewing the recorded presentations.
- Our Care Connection program coordinates needed support from friends and family for people living with ALS and their families. Each month, nearly 60 families received support from over 600 friends, family and community members, including over 390 active volunteers.
- We launched Care Matters, a quarterly e-newsletter, focused on the latest information about ALS care, disease management and resources to help you navigate your ALS journey. Subscribe TODAY!
- The Association awarded $350,000 in scholarships to 70 students for the 2022-2023 school year through The Jane Calmes ALS Scholarship Fund. Established in 2019, the fund was created to support post-high school education for students whose lives have been impacted by ALS. Since its inception, the Association has awarded $1,545,000 in 309 scholarships for students nationwide who are pursuing an accredited college degree or vocational certificate.
Our Local Communities
The teams of professionals who make up our nationwide network of local care work hard to fulfill the Association’s mission in the communities they serve. By expanding care programs and services, advocating for state-wide policy changes, and broadening the scope of community events, these teams go above and beyond to cultivate connection and belonging, providing a better quality of life for families impacted by ALS.
- ALS advocates in Minnesota helped secure a $25 million grant to fund ALS research and support caregivers in the state. Our Connecting ALS podcast featured a discussion of that victory and what it means for people living with ALS across the state.
- This year, more than 57,000 people in communities across the country participated in 166 Walk to Defeat ALS® events. For many participants, these walks provided the first opportunity to gather in person at an ALS event since 2019.
- While West Virginia hosted its first ever in-person Walk to Defeat ALS®, established Walk events in Texas, California, Washington, D.C., Florida, Missouri, and more saw an increase in the number of participants who gathered to honor loved ones living with the disease, to remember those who have passed, and to raise awareness and critical funds to support the fight against ALS.
- The resurgence of successful in-person events continued with the newest signature event to The ALS Association, the CEO Soak. With nine returning CEO Soak events and seven new this year including Sacramento and Pensacola, the CEO Soak continues to inspire community leaders to make a splash in the fight against ALS.
Families Impacted by ALS
Sharing stories from the ALS community is key to creating awareness and a deeper understanding about the impact ALS has on families and generating the support necessary to fight the disease. Over the past year we have produced new PSAs and shared more than 50 stories and profiles online from many of the families we serve who choose to share their personal thoughts and experiences with their ALS journeys.
- In May, during ALS Awareness month, 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.
- Hall of Fame baseball announcer Bob Uecker and his wife lost their daughter Leann to ALS earlier this year. In honor of Leann and another close friend they lost to the disease, Bob lent his voice to the Association, creating a PSA to help raise awareness and enlist others in the fight against ALS. “We are making progress turning ALS from a fatal disease into a livable one, and we need your help to finally strike out ALS,” says Bob.
Receiving more than 135,000 views to date, these PSAs continue to air in markets across the country.
- Throughout the end of this year we also highlighted a series of the Woody family’s journey living with ALS, showing the impact ALS has not just on the person diagnosed, but their family, friends and community around them. Diagnosed in 2018 at the age of 30, Lamar and his wife Kristina live in Auburn with their 9-year-old daughter, Natalie. “I personally believe that the importance of everyone becoming aware of ALS, and what it is, is top tier for me, because I was one of those people who lived and walked around without knowledge of it even existing,” says Lamar.
This series has reached more than 100,000 people to date on our social media channels and continues to capture the hearts of the ALS community.
To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us on our social media channels to learn more.
As 2022 comes to a close, we recognize none of these advancements would have been possible without the ongoing generosity and support of the ALS community: our families and friends, volunteers, partners, sponsors and donors.
Thank you for helping us change the future of ALS.
To learn more about the work of The ALS Association and how you can get involved today, visit als.org.
