About ALS United®
Our Story
When you or a loved one faces ALS, having support in your local community makes all the difference. That's why ALS United brings together independent organizations across the country, each deeply rooted in their communities, to provide care and support where it matters most – close to home.
Our story reflects our unwavering commitment to local, independent ALS care. Our founding members, many of whom helped establish the earliest ALS support organizations in America, came together in 2023 with a shared conviction: that the most effective way to serve the ALS community is through strong, locally-governed organizations that understand their communities' unique needs.
This vision emerged during a pivotal moment in 2021 when different perspectives arose about how to best serve individuals living with ALS. Our founding members, along with other groups, strongly believed in the importance of maintaining independent, local organizations to provide tailored, community-specific support. This commitment to preserving local autonomy and personalized care ultimately led to the formation of ALS United.
While our name may be new, our member organizations have been serving their communities for decades – some for over 40 years. Together, we're ensuring that no one faces ALS alone.
Our Mission
Our mission is to unite members in serving people with ALS. We achieve this by:
- Supporting high-quality, personalized care at the local level
- Fostering collaboration among ALS organizations, researchers, and healthcare providers
- Accelerating breakthroughs by pooling resources for large-scale research initiatives
- Maintaining strong connections within the ALS community
Our Governance
ALS United operates with a unique structure designed to ensure resources directly benefit people with ALS:
- Member-Driven Leadership: Our Board of Directors includes representatives from each member organization, bringing both personal connection to ALS and deep understanding of local community needs.
- Independent Local Governance: Each member organization maintains its own Board of Directors and makes independent decisions to best serve their local communities.
- Collaborative Decision-Making: While members operate independently, they work together through ALS United to share resources, fund research, and advocate collectively.
Our Member Organizations
Each ALS United member is an independent nonprofit organization providing direct support to people living with ALS in their local communities. Our members:
- Design and deliver care services tailored to their community's needs
- Maintain their own local governance and decision-making
- Employ dedicated local staff who know their communities
- Build strong connections with regional healthcare providers
- Advocate for policy and regulatory changes at local and federal levels
- Fund research initiatives independently
What sets us apart is our commitment to hands-on, community-based support. Our members offer various support programs based on their communities' needs. These may include:
- Respite care grants
- Transportation assistance
- Free medical equipment loan programs
- Dedicated care services coordinators
- In-person support groups
- Direct financial assistance programs
Our Research & Clinical Partnerships
ALS United and its members are committed to advancing ALS research through partnerships with prestigious institutions and initiatives:
- Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS): A groundbreaking public-private partnership aimed at accelerating drug development for ALS
- Northeast ALS Consortium (NEALS): Collaborating with the largest clinical research organization dedicated to ALS
- ALS Research Innovation Initiative: Supporting innovative research approaches
- American Brain Foundation: Partnering to advance neurological research
- 90+ Multidisciplinary ALS Clinics: Ensuring access to specialized care nationwide
Working Together for Greater Impact
While our members focus on delivering care locally, they collaborate through ALS United to achieve broader impact:
State & Federal Advocacy
Members work together to advocate for policies that benefit the entire ALS community, coordinating efforts for maximum impact at the state & federal level.
Research Initiatives
Members pool resources to support large-scale research projects and partnerships, including:
- Accelerating Medicines Partnership® in ALS (AMP® ALS)
- ALS Research Innovation Initiative
- Northeast ALS Consortium (NEALS) partnership
- American Brain Foundation partnership
Impact by Numbers
- $40M+ Annual member revenue dedicated to ALS care and research
- 15 Independent member organizations
- 90+ Multidisciplinary ALS Clinics supported nationwide
Financial Structure
Our efficient structure maximizes the impact of every donation:
- Member dues fund our core operations
- Majority of the donations to ALS United are directed to members
- Each member organization maintains independent financial management
- This structure ensures donor dollars go where they're needed most: supporting care in local communities and research
