Advancing ALS Research Together

Our Members Drive Scientific Progress

Advancing ALS Research

At ALS United®, we are dedicated to advancing the discovery of treatments and ultimately finding a cure for ALS. Your support is crucial in fueling global collaboration, funding exceptional research initiatives, and investing in young scientists who will drive the next wave of innovation in ALS research. We prioritize the most promising research endeavors and cultivate innovative partnerships across government, industry, academia, and other nonprofit organizations.

Two individuals holding each-other side by side and smiling
Dr Mary Sedarous presenting on ALS

Our Research Approach

At ALS United®, we are committed to advancing the understanding and treatment of ALS through cutting-edge research. Our unique approach emphasizes the collective strength of our member organizations, which have been at the forefront of ALS research for decades. By leveraging our extensive local expertise and resources, we foster an environment of innovation and collaboration that drives significant progress in the fight against ALS. Our members’ contributions are crucial in identifying research priorities, conducting groundbreaking studies, and translating discoveries into practical treatments.

Accelerating Medicines Partnership for ALS (AMP® ALS)

ALS United® is proud to support the Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS) with a commitment of $500,000 from our members. This initiative is a collaborative effort involving the National Institutes of Health (NIH), the Foundation for the National Institutes of Health (FNIH), the Food and Drug Administration (FDA), pharmaceutical and biotechnology companies, and non-profit organizations. AMP ALS is designed to accelerate the identification of new and effective therapies for people living with amyotrophic lateral sclerosis (ALS) or at risk for developing the disease.

AMP ALS addresses the challenges of disease heterogeneity, fragmented research efforts, decentralized data storage, and a lack of standardized clinical tools. Through this public-private partnership, the development of new diagnostics and treatments is being transformed by jointly identifying and validating promising biomarkers, new and optimized clinical outcome assessments, and biological targets for therapeutics.

Goals of AMP ALS:
  • Establish a central ALS Knowledge Platform for data sharing and analysis through a cloud-based infrastructure.
  • Develop validated biomarkers for early diagnosis and treatment assessment.
  • Improve clinical outcome assessments.
  • Discover new therapeutic targets and risk factors.
stock photo of a scientist experimenting with a test tube

The project brings together data and biospecimens collected from various research studies, including the Access for All in ALS (ALL ALS) Consortium and ACT for ALS expanded access research studies. This information is made available via the openly accessible ALS Knowledge Portal and biorepositories, enhancing the ability of researchers to identify novel research and therapeutic targets.

People with lived experience (PWLE) are central to the AMP ALS project. They include those diagnosed with ALS or at genetic risk, loved ones, caregivers, and those who have lost loved ones to ALS. PWLE are involved in all aspects of the project, from design to implementation, working alongside ALS research advocates and representatives from the NIH, FNIH, FDA, C-Path, and ALS organizations. Their active participation and input contribute significantly to the direction and progress of AMP ALS.

“ALS United® is honored to champion the AMP ALS project, made possible by the steadfast support of our members nationwide. This initiative underscores the significance of collaboration between public and private organizations in advancing ALS research. With its comprehensive strategy, including a central ALS Knowledge Platform and the pursuit of validated biomarkers and therapeutic targets, this project holds immense promise in addressing the urgent needs of people living with ALS. Together, we’re not just envisioning hope and progress; we’re actively forging the path towards a brighter future for the people we exist to serve.”

 Jerry Dawson

 Executive Director, ALS United®
Visit the AMP ALS Website

Our Financial Commitment

photo of young individual with ALS. They are vibrant with purple and magenta hair and blue nails

ALS United® members demonstrate an unwavering commitment to advancing ALS research through substantial and diverse funding initiatives. For the current fiscal year (February 1, 2024 – January 31, 2025), our members have already committed nearly $3 million dollars to a robust research portfolio.

This includes funding for:

  • AMP ALS (FNIH)
  • ALS Research Network
  • ALS Research Fellowships
  • Northeast ALS Consortium
  • American Brain Foundation ALS Research
  • Essey Research Award

This diverse portfolio reflects our members’ dedication to exploring multiple avenues in the fight against ALS, from basic science to clinical trials and innovative therapies. These figures represent only a portion of our members’ total research investment, as they do not include millions of dollars in commitments to active research initiatives from previous fiscal years.

Find a clinical trial that’s right for you.

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Get Involved

Your involvement is vital to our mission. Whether through donations, volunteering, or participating in our events, you can make a significant impact on the lives of those affected by ALS. Your generous support enables our members to fund millions of dollars in research every year and provide essential services to the ALS community.