ALS United

What ALS United does

ALS United is a U.S. nonprofit federation formed in 2023 that unites 15 independent member organizations to deliver care, services, advocacy, and research funding for people living with amyotrophic lateral sclerosis (ALS) and their families. Headquartered in Beaverton, Oregon, and led by CEO Jerry Dawson and Board Chair Jim Mortensen, the federation channels more than $40 million in combined annual member-organization revenue toward ALS programs and supports a national network of 90+ multidisciplinary ALS clinics, support groups, and community fundraising chapters. Its federal advocacy work has been a primary driver behind the ACT for ALS Act (2021), the ALS Disability Insurance Access Act (2020), the Senator Elizabeth Dole Act (2025), and the 2022 FDA approval pathway for Tofersen.

Its core products and technology platforms include the ALS United mobile app (which integrates with Apple Health and fitness activity tracking for symptom and progression monitoring) and the ALS Knowledge Portal (a researcher-facing data infrastructure asset consolidating the ALL ALS Consortium, with 1,200+ enrolled participants and tens of thousands of contributed biosamples). The federation has committed nearly $3 million to research for FY 2024-2025, including a $500,000 commitment to the Accelerating Medicines Partnership for ALS (AMP ALS), and partners with NIH, FDA, the Foundation for the National Institutes of Health (FNIH), NEALS, AMP ALS, the American Brain Foundation, the Critical Path Institute, and the Congressional ALS Caucus.

Its business model is federated nonprofit funding. Member organizations operate locally on diversified revenue streams including individual donations, legacy gifts, corporate sponsorships, and grassroots events such as Walks, rides, and galas, while the national federation coordinates advocacy, shared digital infrastructure, and pooled research grant-making. Through the ACT for ALS Expanded Access Programs, more than 700 patients have received investigational therapies, and the broader federation model is designed to consolidate administrative scale, expand policy influence, and centralize research investment across the previously independent chapters.

Name

ALS United

Legal name

ALS United®

Website

https://alsunited.org

Company type

Private

Founded year

2023

Operating status

Operating

Short description

ALS United is a nonprofit federation of 15 member organizations delivering ALS care services, clinical network support, research funding, and federal advocacy across the United States from its Beaverton, Oregon headquarters.

Ownership category

akta.pro rank

Product category

Nonprofit ALS Patient Support Services

NAICS

Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (62412)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• ALS patient support
• ALS care services
• ALS research funding
• Disease advocacy services
• Caregiver support programs

Headquarters

HQ city

Beaverton

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: Individual and corporate donations are the primary revenue source. The majority of donations to ALS United are directed to member organizations for local ALS care and research. The organization processes donations through its website and app.
2. Member Dues: Member organizations pay dues that fund core operations of ALS United national organization. Each of the 15 independent member organizations contributes dues based on their revenue and capacity.
3. Federal Research Grants: ALS United and its members receive federal funding through NIH and Congressionally Directed Medical Research Program (CDMRP) for ALS research initiatives. For fiscal year 2024-2025, members committed nearly $3 million to research including AMP ALS, ALS Research Network, fellowships, and clinical trials.

Go-to-market motion3 records

Distribution channels4 records

Marketing channels8 records

Core offering

ALS United is a national nonprofit federation of 15 independent member organizations that deliver local ALS care, support, and community resources to people living with Amyotrophic Lateral Sclerosis (ALS) and their families. The organization coordinates multidisciplinary clinic access, respite care grants, equipment loans, transportation assistance, support groups, and direct financial aid, while funding approximately $3 million annually in ALS research and advocating for federal policy changes including ACT for ALS legislation.

Product overview

ALS United operates as a nonprofit federation providing a suite of services for the ALS community rather than a single unified product. The core offerings include the ALS United mobile app for activity tracking and fundraising, the ALS Knowledge Portal for research data sharing, and the ALS Clinic Finder for locating specialized care. The organization coordinates 15 independent member organizations through a network model, each providing localized support services such as respite care, equipment loans, and support groups. Research initiatives are advanced through partnerships with prestigious institutions including AMP ALS, NEALS, and the American Brain Foundation. Advocacy services include a digital platform for Congressional outreach. The product architecture combines direct-to-patient tools (mobile app, clinic finder) with researcher-facing platforms (knowledge portal, clinical trial finder) and community coordination infrastructure.

Differentiator

Problem solved

Functional benefit

Products and services

• ALS United Mobile App
• ALS Knowledge Portal
• ALS Clinic Finder
• Clinical Trials Finder
• Member Organization Network (Local ALS Support Services)
• Advocacy Action Alerts Platform
• ALS Research Funding Programs

Quantifiable outcome

• 700+ people living with ALS received access to investigational therapies through 5 NIH Expanded Access Programs
• +4 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration7 records

Feature2 records

Partnerships

Eleven partnerships are on record, tiered core and major.

• Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS)coreStrategic or Co-development Partner · 1 February 2024ALS United supports AMP ALS with a $500,000 commitment from members. This public-private partnership includes NIH, FNIH, FDA, pharmaceutical and biotechnology companies, and nonprofit organizations. The initiative addresses disease heterogeneity, fragmented research efforts, and lack of standardized clinical tools through a central ALS Knowledge Platform for data sharing and biomarker validation.
• Northeast ALS Consortium (NEALS)coreStrategic or Co-development PartnerALS United and its members partner with NEALS, the largest clinical research organization dedicated to ALS. NEALS conducts clinical trials and provides a trial finder tool to help patients find appropriate research studies.
• American Brain FoundationmajorStrategic or Co-development PartnerPartnership to advance neurological research, including ALS research initiatives supported by ALS United members through funding and collaborative research programs.
• ALS Research Innovation InitiativemajorStrategic or Co-development PartnerInitiative supporting innovative research approaches to ALS treatment and cure. Members pool resources to fund cutting-edge research projects and emerging therapeutic strategies.
• ALS Research NetworkmajorStrategic or Co-development PartnerNetwork of researchers and institutions collaborating on ALS clinical trials and research studies, funded through member commitments for the current fiscal year.
• NIH (National Institutes of Health)coreStrategic or Co-development PartnerNIH administers the ACT for ALS Expanded Access Programs, ALL ALS Consortium natural history study (1,200+ participants), Rare Disease Grant Program, and shared data infrastructure. NIH has launched five EAPs providing access to investigational therapies for 700+ people with ALS.
• FDA (Food and Drug Administration)coreStrategic or Co-development PartnerFDA partners through AMP ALS and CP-RND (Critical Path for Rare Neurodegenerative Diseases) initiative to develop common data standards and fit-for-purpose tools to evaluate ALS treatments more efficiently, including biomarkers and clinical outcome assessments.
• Foundation for the National Institutes of Health (FNIH)coreStrategic or Co-development PartnerFNIH manages the AMP-ALS public-private partnership and ALS Knowledge Portal, aligning federal agencies, academic scientists, companies, and nonprofits around shared data and shared priorities for ALS research.
• 90+ Multidisciplinary ALS ClinicscoreStrategic or Co-development PartnerALS United partners with 90+ multidisciplinary ALS clinics nationwide to ensure access to specialized coordinated care. These clinics feature teams including neurologists, respiratory therapists, physical therapists, occupational therapists, speech pathologists, dietitians, social workers, and mental health professionals.
• Critical Path Institute (C-Path)majorStrategic or Co-development PartnerC-Path participates in AMP ALS as part of the public-private partnership, contributing to the development of biomarkers, modeling platforms, and clinical outcome assessments for ALS treatment evaluation.
• Congressional ALS CaucuscoreStrategic or Co-development PartnerBipartisan Congressional caucus focused on practical policy solutions and sustained research investment for people living with ALS. ALS United advocates for Representatives to join and support the caucus.

Scale indicators9 records

Recent moves7 records

Expansion highlights5 records

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles17 records

Subsidiaries15 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about ALS United