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

MEET THE CORE: SUSAN BRENNER-MORTON

MEET THE CORE: SUSAN BRENNER-MORTON Susan Brenner-Morton is an antibody expert who has spent decades developing these specialized tools to help us understand how motor neurons function normally—and dysfunction in ALS. We sat down virtually with Susan, who is Director …

/ Read More
ALS Research Lab

Improving Pharmacokinetic Properties of Promising Compounds

In our biweekly webinars, we have described the process of developing Prosetin—the first potential investigational drug to emerge from The Project ALS Therapeutics Core at Columbia (THE CORE)—in detail. A collaborative team led by Drs. Emily Lowry, Pieter Bos, Brent …

/ Read More
The Wasserman Family

One Family’s Passionate Fight Against Neurodegenerative Diseases

The Wasserman family has experienced first-hand the devastating effects of neurodegenerative diseases: Sandra Wasserman lost her beloved husband to Parkinson’s disease, and her son to glioblastoma. Now in her eighties, Sandra has friends experiencing the debilitating consequences of Alzheimer’s disease …

/ Read More

PROGRESS

Prosetin Receives Orphan Drug Designation

Earlier this month, we reached a big regulatory milestone: Prosetin received Orphan Drug Designation, or orphan status, for the treatment of ALS from the Food and Drug Administration (FDA). Here, we break down what orphan status means, why it’s important, …

/ Read More
ALS Research Lab

Improving Pharmacokinetic Properties of Promising Compounds

In our biweekly webinars, we have described the process of developing Prosetin—the first potential investigational drug to emerge from The Project ALS Therapeutics Core at Columbia (THE CORE)—in detail. A collaborative team led by Drs. Emily Lowry, Pieter Bos, Brent …

/ Read More
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, …

/ Read More

OUR ACTIVITY

MILESTONES

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

2017

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

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

2013

  • 26 ALS genes now identified

2012

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

2011

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

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.

2008

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.

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

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.

2003

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.

2000

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

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

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.

NEWS & EVENTS

MEET THE CORE: SUSAN BRENNER-MORTON

MEET THE CORE: SUSAN BRENNER-MORTON Susan Brenner-Morton is an antibody expert who has spent decades developing these specialized tools to help us understand how motor neurons function normally—and dysfunction in ALS. We sat down virtually with Susan, who is Director …

/ Read More

Prosetin Receives Orphan Drug Designation

Earlier this month, we reached a big regulatory milestone: Prosetin received Orphan Drug Designation, or orphan status, for the treatment of ALS from the Food and Drug Administration (FDA). Here, we break down what orphan status means, why it’s important, …

/ Read More