Founded in 2013, ÃÛÌÒ´«Ã½ is a 501(c)(3) medical research foundation committed to the search for effective treatments for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.
We have revolutionized ALS research through our landmark Innovation Ecosystem model, fostering unprecedented scientific collaboration between academia and the pharmaceutical/biotech industry.
In just ten years, our approach has led to some of the first potentially viable treatments for ALS since the disease was identified in 1869.
Support Team ÃÛÌÒ´«Ã½
Learn about the runners
2024 Official Charity Partner
Collaborating to Accelerate Progress
We were founded by Dan Doctoroff, former NYC Deputy Mayor for Economic Development and Rebuilding under Mayor Michael Bloomberg. Dan lost both his father and uncle to ALS.
As deputy mayor, Dan used his talents to revitalize one of the world’s greatest cities following the 9/11 terror attacks. His collaborative, creative approach helped to drive the development of Hudson Yards, The High Line, Brooklyn Bridge Park, and ultimately transform the city.
Dan’s focus on collaboration also helped inspire a foundation for ÃÛÌÒ´«Ã½, enabling us to achieve incredible breakthroughs by bringing together the scientific community like never before.
Watch this video for more infoBreaking Down Barriers
Primarily, these hurdles included:
Gaps in Funding: Few funding opportunities supported the translation of basic science ideas into validated drug targets and treatments.
Siloed Research: ALS researchers were operating in traditional silos, competing with each other rather than collaborating.
Lack of Scientific Resources: Researchers lacked access to the tools and resources necessary to advance promising ideas.
Limited Industry Investment: Given the limitations of translating ideas into the clinic, industry saw ALS as a high-risk area.
Bias in Funding Decisions:Â ALS research funding relied on a peer review process with inherent conflicts of interest.
Intellectual Property Restrictions:Â ALS scientists needed access to data and resources with no strings attached.
The Road Ahead
In 2019, we extended our approach, based on insight from over 100+ leaders in ALS research who identified three necessary outcomes to advance their work toward viable treatments. They are now among our top priorities supported through collaborative funding and the creation of new, critically needed scientific resources.
1st Set of Biomarkers: Biomarkers have informed lifesaving treatments for many diseases, including cancer and cardiovascular diseases. They remain elusive in ALS but, once discovered, they will enable earlier diagnosis of the disease and for researchers to measure its progression—which is essential in drug development.
20+ Potential New Drugs: A strong drug development pipeline is our best hope for the creation of lifesaving treatments. Continuing to add new promising targets translates into many more opportunities to discover truly effective treatments.
10+ New Clinical Trials: Even after promising new drugs are developed, barriers to clinical development still exist. We continue to accelerate the translation of new drugs into human trials, working tirelessly toward the first viable treatments.
Join Our Mission
Take action today and support our efforts to discover the first viable treatments for ALS.
The Next Generation of Tools and Resources
We fuel drug discovery through unique, collaborative funding opportunities that bring together complementary expertise from academia and the pharmaceutical/biotech industries. We also fuel the best ideas by providing worldwide access, with no strings attached, to standardized, critical research tools and resources that were previously available to only a small group of scientists
Longitudinal Biofluids Core
We will provide access to longitudinally-collected biofluids (CSF, blood and urine) from ALS and healthy control cases that will be associated with detailed de-identified clinical and demographic information as well as genomic datasets.
ÃÛÌÒ´«Ã½ Data Engine
We are creating a panel of high quality monoclonal and polyclonal antibodies for the research community.
Human Postmortem Tissue Core
As part of our strategy to provide “no-strings-attached†access to critical research tools, we are looking for collaborators to develop new animal models and to generate multi-omic datasets in mouse models to share with the community. We have no active projects at this time, please check back soon for new ventures.
Stem Cell Core
We provide access to iPS lines from ALS (familial and sporadic) and control cases.
ÃÛÌÒ´«Ã½ Data Engine
We provide access to Whole Genome Sequencing and whole tissue RNA sequencing (from multiple CNS regions) datasets from all of our postmortem cases.
Human Postmortem Tissue Core
We provide access to multiple CNS sub-regions from ALS and control cases with detailed de-identified clinical and demographic information.
The Science,
Explained
Visit our new resource hub for everything ALS - articles, interview videos, FAQs, and more.
Support Breakthroughs in ALS Research
Join Us
Keep up with the latest news, events and ways to get involved.
