ALS United: Our Story

Who We Are

ALS United is a collaborative network of member organizations across the United States, dedicated to supporting individuals living with Amyotrophic Lateral Sclerosis (ALS) and their families. While our name may be new, our roots run deep – some of our member organizations have been serving their communities for over 40 years.

Our Origins

Our founding members, driven by a commitment to prioritize the immediate needs and long-term well-being of those affected by ALS, came together to form an organization that would:

  • Support its members in providing high-quality, personalized care at the local level
  • Foster collaboration among ALS organizations, researchers, and healthcare providers
  • Accelerate ALS breakthroughs by pooling member resources to fund large-scale research initiatives like AMP ALS, maximizing our collective impact on scientific progress
  • Maintain and leverage long-standing connections within the ALS community

Why We Exist

Our organization was born during a pivotal moment in the ALS community when discussions were taking place about how to best serve individuals living with ALS, with various perspectives emerging on the most effective approaches. Our founding members, along with other groups, strongly believed in the importance of local autonomy to provide tailored, community-specific support. This vision of maintaining a strong local presence and personalized care ultimately led to the formation of ALS United, as a way to ensure that those affected by ALS would continue to receive dedicated, locally-driven assistance.

ALS United exists to:

  • Ensure all voices in the ALS community are heard and represented
  • Provide transparent, accountable, and person-centered care
  • Encourage innovation in ALS care and research
  • Unite the ALS community in the fight against this devastating disease

Looking Forward

As we continue to grow, our commitment to collaboration, innovation, and person-centered care remains unwavering. We're dedicated to improving the lives of those affected by ALS and working tirelessly towards finding a cure.