Twenty years ago, Project ALS changed the way scientists and doctors conducted ALS research. As a result, we are closer to the first effective treatments for ALS.

The Project ALS business model—now widely adopted–requires that leading ALS researchers work together, share data openly, and meet shared deadlines. Project ALS works collaboratively with its scientists to identify the most promising ALS research and, along with its Research Advisory Board (RAB), streamlines the research process with effective strategies. Project ALS assesses progress through regular meetings and reviews by the RAB.

Project ALS engages in the ongoing recruitment of innovators, not only from neuroscience, but diverse disciplines including stem cell biology, mathematics, computation statistics, chemistry, bioimaging, and industry, to contribute to the growing body of knowledge of what goes wrong in ALS—and how we will fix it. Project ALS provides research funding on a rolling basis, ever poised to support innovation.


ALS Research Lab

What is the Core?

Begun in 2017, the Project ALS Pre-Clinical Core (the Core) is the first rational, aggressive effort to rapidly and thoroughly test promising therapies for safety and potential efficacy in ALS before they reach human clinical trial. Located at the Columbia …

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ALS Research Lab

New Drug Targets

The Core is the culmination of 20 years of Project ALS research achievements in genetics, stem cell research, and basic research studies. These breakthroughs allow the Core to target ALS more accurately. Recent discoveries in ALS genetics provide new therapeutic …

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ALS Researchers Working Together

The Best Scientists Working Together

It is highly unlikely that a cure for ALS disease will come until we understand more about brain development, motor behavior and circuitry. Project ALS remains committed to supporting select basic research, as much of its 20 years of progress …

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ALS Seminar

Researchers Work Together

In 1998, ALS researchers worked mostly in isolation, often even competing against one another. Project ALS transformed this approach, recruiting world-leading scientists from different fields to work on ALS together, meet regularly, and share data openly. Due to this shift, …

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ALS Research

We Know More Today

Project ALS was the first organization to use stem cells to model human ALS; this practice is now used worldwide. Project ALS scientists also use patient stem cells to screen for drugs.

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ALS Research Lab

Better Therapies in Development

Project ALS forced a culture shift in ALS research; our first and most crucial breakthrough. In 1998, ALS researchers worked mostly in isolation, often even competing against one another. Project ALS transformed this approach, recruiting world-leading scientists from different fields to work on ALS together, meet regularly, and share data openly. Due to this shift, there has been more advancement towards a cure for ALS in the past 20 years than in the previous 100.

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  • Pre-Clinical Core identifies several drugs of promise for ALS
  • Project ALS celebrates 20th Anniversary. Over $90 million raised in 20 years with 89% going to research programs.
  • Researchers funded reaches 95 at 35 institutions worldwide



  • Autophagy in ALS begins, a three-year study connecting researchers from Columbia, Cornell, UCSF, NYU and NY Genome Center
  • Salk Institute researchers show that brain cells called interneurons contribute to ALS


  • Don’t-Talk-a-Thon, the first Project ALS online fundraising campaign raises $600,000 and counting
  • Establish Mass General/Project ALS Internship Program


  • 26 ALS genes now identified


  • RAB adds Nobel laureate as well as renowned experts from pharmaceutical/biotech, and neuroscience



  • Establish P2ALS, a $15 million partnership with Johns Hopkins, Dan Doctoroff and Michael Bloomberg
  • Fund first multi-lab study focused on selective vulnerability of motor neurons in ALS


  • Built first library of ALS patient cell lines, including those with genetic mutations
  • Develop “ALS In a Dish” – a helpful new tool for studying human ALS.



  • Women & the Brain starts; a Project ALS-created initiative to raise awareness for brain health and support for talented neuroscientists and need-based medical students with a focus on neurology.


  • Project ALS/Jenifer Estess Laboratory for Stem Cell Research opens, the world’s first and only privately funded lab to focus exclusively on stem cells and ALS.
  • Estess Lab team derives first functional human motor neurons from stem cells


  • Launched largest-ever study in ALS genetics with Harvard Neurodiscovery Center
  • Premier of HBO Documentary Three Sisters: Searching for a Cure, an in-depth look at Jenifer Estess and Project ALS
  • Tales from the Bed, Jenifer’s memoir, becomes a national bestseller.



  • First ALS specific gene therapy experiments at the Salk Institute. Treated mice survive 33.3% longer than untreated group.
  • Original movie event Jenifer premiers on CBS and draws national attention to Project ALS
  • Jenifer Estess named a Glamour Magazine’s “Women of the Year”. Project ALS named Vanity Fair’s “It List” charity.


  • Jenifer Estess testifies before US Congress to the importance of federal funding for stem cell research in ALS


  • Project ALS team at Mass General builds first standardized cell based-assay for rapid ALS drug testing
  • First to study stem cells and ALS. Pilot studies at Children’s Hospital Boston and Johns Hopkins.
  • Gala fundraisers in NY and LA unite entertainment and corporate communities


  • Jenifer Estess diagnosed with ALS at 35. Jenifer, her sisters, and friends start Project ALS as the first 501(c)3 nonprofit dedicated solely to ALS research.
  • Board of Directors and Research Advisory Board established
  • First $1 million raised for collaborative experiments among scientists at Harvard University, Johns Hopkins, and Columbia University.


ALS patients, caregivers, and advocates with Senators Mike Braun and Lisa Murkowski at the 2020 More Than Our Stories advocacy conference.

Project ALS Endorses New ALS Legislation

Project ALS is encouraged by the introduction of two bills that aim to provide people with ALS faster, more robust access to experimental therapies. These bills are significant for specific, substantive reasons detailed below. Perhaps as importantly, they represent a …

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A COVID-19 Research Update

Dear Friends, Project ALS is acutely aware of the unimaginable circumstances that Americans and people around the world are now facing. Our hearts, souls, and minds are heavy with the dire situation that ALS patients, family members, and loved ones …

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