ALS Advocacy: Get Involved, Make a Difference

What Is an ALS Advocate and Why Your Voice Matters

Defining ALS advocacy: Beyond awareness to systemic change

ALS advocacy goes beyond raising awareness -- it means actively working to change the laws, policies, and funding systems that affect people living with ALS and their families. [1] An ALS advocate is someone who uses their voice to educate lawmakers, push for legislative priorities, and hold government accountable for expanding research, improving care access, and strengthening financial support. [2] This work spans federal, state, and local levels, mobilizing patients, caregivers, and community members to take direct action that shapes real policy outcomes. [3] Decades of organized engagement, documented in our [advocacy history](https://www.alsunited.org/advocacy-history), show how individual voices -- when united -- have delivered measurable wins, from increased federal research funding to expanded care coverage for people living with ALS.

How individual advocates shape policy and funding for ALS research

Individual advocates drive measurable policy results. In the first six months of 2023, ALS advocates sent more than 30,000 letters to Washington and took over 40,000 collective actions, while state-level funding allocations grew from roughly $6 million to $20 million in a single year.[4] Sustained grassroots pressure from patients, caregivers, and community members was central to passing the ACT for ALS Act in December 2021, which expanded access to investigational treatments and eliminated Medicare waiting periods for people living with ALS.[5] Personal stories from advocates also directly shape federal messaging -- collected, anonymized, and submitted to agencies like CMS to document access gaps and push for coverage changes.[4]

The ripple effect: Why one person's advocacy helps thousands living with ALS

When a single advocate sends a letter, attends a town hall, or submits a personal story, that action joins a larger record that lawmakers and agencies draw on when making funding and coverage decisions. Through sustained collective effort since 2019, advocacy has contributed to more than $1.6 billion in secured federal ALS research funding -- resources that flow to researchers, clinicians, and patients who never made a single call to Congress. [6] Victories like Medicare coverage for complex rehab equipment and Social Security disability recognition for people with ALS now protect thousands of families who benefit from policy changes they never knew were fought for. [2] Together in the fight, every advocate's voice extends further than they can see.

Concrete Ways to Advocate for the ALS Community Right Now

Contact elected officials: Template letters and talking points for ALS legislation

Contacting your elected officials is one of the most direct actions you can take for ALS legislation. A single-page letter or email works best when it opens by identifying you as a constituent and naming the specific bill you support or oppose, using its official House or Senate bill number. [7] Choose three focused talking points -- such as research funding gaps, care access barriers, or coverage delays -- and tie at least one to a personal story that shows how ALS affects your family or community. [7] Legislative offices track constituent messages and use them to gauge local support when forming positions, so every letter adds to the public record. [8] Our [action alerts page](https://www.alsunited.org/advocacy-action-alerts) keeps current bill numbers and ready-to-send templates updated throughout each legislative session.

Participate in ALS United's community advocacy programs and local events

Community-led advocacy events do more than raise awareness -- they place the community's voice directly in front of the state and local leaders who set funding priorities and shape program access. [9] These events create documented opportunities to reduce stigma, highlight service gaps, and give policymakers firsthand exposure to the people their decisions affect. [9] Community advocacy is, at its core, a strategic approach to representing your community's needs to the level of government best able to respond -- and local events are where that representation becomes real and visible. [10] Our member events and local advocacy programs are built around this model, connecting people living with ALS and their caregivers with others who share the same fight and the same goals. You can find current events and ways to participate at [alsunited.org](https://www.alsunited.org/).

Share your story: How personal narratives drive policy change and funding decisions

Personal stories move lawmakers in ways that statistics alone cannot -- a reality Jen Psaki, who worked closely with ALS advocates during the Biden administration, described plainly: Washington officials are "motivated less by data and statistics and more by human stories." [11] When Brian Wallach and Sandra Abrevaya testified before the House Committee on Energy and Commerce's Subcommittee on Health in July 2021, Wallach opened with a single line: "This is our closing argument for our lives" -- testimony that helped build the bipartisan momentum behind the ACT for ALS Act. [12] Sharing your story through written testimony, congressional visits, or organized advocacy campaigns places it in the official record, where it directly shapes funding priorities and coverage decisions for thousands of people living with ALS. [11]

ALS Advocacy Wins: What Advocates Have Already Achieved

Federal legislation timeline: Key ALS victories from 2020 to 2026

The ACT for ALS, passed in December 2021 with bipartisan support, established five years of federal funding for [expanded access to investigational treatments](https://www.alsunited.org/act-for-als) and a coordinated national research infrastructure that did not previously exist. [13] The FY2026 federal funding package, secured through sustained advocate engagement, delivered $45 million in new research increases -- including $90 million for ACT for ALS programs at NIH and a new $30 million investment through ARPA-H. [14] With the law set to expire in September 2026, advocates are now pressing Congress to reauthorize it without delay, as lapsing would put $500 million in future funding and the expanded access program at immediate risk. [13]

Access to care improvements won through sustained advocacy efforts

Sustained advocacy has produced concrete improvements in healthcare access and financial support for ALS families. The Credit for Caring Act (H.R. 2036/S.925) would give working family caregivers a federal tax credit of up to $5,000 -- recognition that unpaid caregiving carries real financial costs for families already managing significant medical expenses. [15] The Justice for ALS Veterans Act (H.R. 749/1685) targets a documented gap in VA survivor benefits: veterans are twice as likely to be diagnosed with ALS as the general population, yet many surviving families are excluded from full compensation because ALS typically progresses faster than the eight-year threshold current policy requires. [15] Advocates continue pressing for the ALS Better Care Act to address additional coverage barriers that affect day-to-day care access for people living with ALS. [15]

Research funding increases: How advocacy translates to clinical breakthroughs

Federal ALS research funding for FY2026 reached $315 million -- the highest level ever secured -- driven by a coalition of more than 30 ALS organizations working alongside individual advocates across the country. [16] This funding directly supports research into the causes of ALS, translation of laboratory discoveries into new treatments, and improvements in clinical trial design and access. [16] Sustained investment through NIH and the Congressionally Directed Medical Research Program (CDMRP) has kept critical research programs running year over year, building the scientific infrastructure needed to move potential treatments from the lab toward patients. [2] As ALS advocates and organizations noted after the vote passed, every phone call, meeting, and letter to congressional leaders truly mattered -- a direct line between grassroots advocacy and clinical progress. [16]

Getting Started With ALS United's Advocacy Network

Find your local advocacy chapter: ALS United's clinic finder and member organizations

Finding your nearest ALS United member organization starts with the clinic finder at alsunited.org, which maps regional member organizations that coordinate local advocacy, events, and care access. As of September 2023, fifteen independent chapters -- representing nearly half of the U.S. ALS patient community and more than half of all Certified Treatment Centers of Excellence and multidisciplinary specialty clinics -- operate as a coordinated network, each focused on the distinct needs of its region while sharing information and resources across the country. [17] Local member organizations connect people living with ALS and their families to care services, advocacy opportunities, and community events, while the national network ties their work to federal legislative priorities. [18] These organizations make it possible to act locally with national impact.

Training and resources: What ALS United provides to new advocates

New advocates entering the ALS network don't need prior policy experience to get started -- structured training resources exist to build confidence from the ground up. Effective advocacy training combines self-paced learning modules, expert-led webinars, and downloadable toolkits that participants can work through on their own schedule. [19] Programs built for people with real workloads focus on actionable steps rather than theory -- skills like contacting legislators, sharing personal testimony, and engaging in coalition campaigns. [20] Our resources follow this model, giving every new advocate a clear foundation to act with confidence at any level of the legislative process.

Connect with others: Community events and support networks for advocates and caregivers

Community events and peer support networks give ALS advocates and caregivers both emotional grounding and practical knowledge that sustains long-term engagement. Peer support groups with recurring monthly schedules -- including virtual care groups organized around specific caregiving situations -- make consistent connection accessible regardless of location. [21] Studies show that caregiver support services reduce depression, anxiety, and stress while enabling caregivers to provide care longer -- in one year alone, more than 700,000 caregivers received services through the National Family Caregiver Support Program. [22] Our [ALS support groups](https://alsunited.org/blog/als-support-groups-connecting-with-others-facing-the-disease/) connect people living with ALS, caregivers, and advocates with others who share the same experiences -- with community that lasts beyond any single event.