The Project ALS Approach

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.

The Project ALS Pre-Clinical Core

Progress

OUR ACTIVITY

MILESTONES

1998
  • 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.

Valerie, Jenifer, and Meredith Estess

 

 

 

 

 

 

 

 

1999
  • 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

2000
  • Jenifer Estess testifies before US Congress to the importance of federal funding for stem cell research in ALS

2002
  • 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.

2003
2004
  • 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.

2006
  • 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
2007
  • 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.

2008

 

2009
  • 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.

iPS-derived motor neurons

2010
  • 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

Meredith Estess, Martha Nelson, Mayor Michael Bloomberg, Valerie Estess

2011

astrocytes

2012
  • RAB adds Nobel laureate as well as renowned experts from pharmaceutical/biotech, and neuroscience

2013
  • 26 ALS genes now identified

2014
  • Don’t-Talk-a-Thon, the first Project ALS online fundraising campaign raises $600,000 and counting
  • Establish Mass General/Project ALS Internship Program

2016
  • 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

2017
2018
  • 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

NEWS & EVENTS

Seven Mothers Unite in New York City to Solve Medical Mystery: ALS Geneticists at Columbia University Look to Mothers and Late Daughters for Clues to Rare Juvenile ALS

Aug 8, 2018

Seven teenage girls from across the country, aged 17 to 22, have died from ALS, a disease primarily affecting the middle-aged. For years, their mothers…

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Project ALS Researcher Develops Groundbreaking AI Tool

Jul 23, 2018

Women & the Brain scholarship recipient Dr. Mackenzie Mathis of Harvard University…

Uplifting Athletes Grants Project ALS Researcher Young Investigator Award

Jun 5, 2018