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.
RESEARCH AND NEWS
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.
Uplifting Athletes Grants Project ALS Researcher Young Investigator Award
Uplifting Athletes will honor Project ALS-funded Columbia University researcher Emily Lowry, PhD, with one of its first five Young Investigator Awards. Uplifting Athletes, a nonprofit
Project ALS-Funded Researcher Elevates Standard of Drug Testing for Neurodegenerative Diseases; Graduates with Distinction from Columbia University Master’s Program
Alejandro Garcia, who began working with Project ALS in 2009 as a research technician, and eventually lab manager of the Jenifer Estess Stem Cell Lab
Project ALS Sponsors Massachusetts General Hospital Internship To Further The Field
Meet Elizabeth Adelson, a neuroscience student at Yale University whom Project ALS will sponsor this summer, along with 4 other students, for a research internship
Columbia Scientist Emily Lowry Awarded Tom Kirchhoff Family Post-Doctoral Fellowship
Named in honor of former Project ALS board member and inspiration Tom Kirchhoff, the Tom Kirchhoff Family Post-Doctoral Fellowship at Project ALS is given to
How is the TDP-43 Gene Involved in ALS?
An exciting Project-ALS funded study on the involvement of the gene TDP-43 in ALS-frontotemporal dementia. Understanding how TDP-43 contributes to neurodegeneration will help direct therapeutic
MILESTONES
2020
- Prosetin receives Orphan Drug Designation from the US Food and Drug Administration
- Project ALS launches research partnership with Medidata Institute targeting new, actionable insights into ALS disease progression and subtypes
- Project ALS responds to challenges presented by the global COVID-19 pandemic and continues to move forward with new virtual fundraising efforts
2019
- Project ALS announces prosetin, the first investigational drug to emerge from THE CORE as a potential treatment for ALS
- Jaci Hermstad receives first ever dose of jacifusen, a custom antisense oligonucleotide gene therapy to address Jaci’s genetic form of ALS
- Project ALS launches a free and open to the public webinar series featuring a range of experts for accessible, conversational updates covering research, hot topics in ALS drug development, and stories of people with ALS
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
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
- Basic studies at Columbia, Harvard, and Stanford show that brain cells called astrocytes are involved
- C9orf72 gene identified as having role in both familial and sporadic ALS
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
- Estess Lab, Columbia and Harvard researchers derive motor neurons from ALS patient skin. Achievement named Time magazine’s Medical Breakthrough of the Year.
- Project ALS celebrates 10 years with $50 million raised and 87% of revenue directed to research programs at 25 academic institutions.
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
- Researchers from Dalhousie University show that stem cell-derived motor neurons connect with and stimulate muscle.
- Jenifer Estess dies of ALS at age 40.
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.
2001
- Scientists at Columbia University differentiate mouse stem cells into functional motor neurons, the very brain cells destroyed in ALS.
- At John Hopkins, rats with ALS-like syndrome recover significant motor function after stem cell treatment
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.
