ALS ACT is a novel academic-foundation-industry partnership with ALS Finding a Cure®, initiated with researchers from General Electric (GE) Healthcare and four academic Northeast ALS Consortium (NEALS) sites to accelerate treatments for people living with ALS. Through a multi-pronged approach, each partner will contribute to expediting clinical trials in ALS.
The ALS Association Commitment
The ALS Association committed $10 million that was matched by an additional $10 million by ALS Finding a Cure. Funding was announced in October 2014 that directly resulted from donations from the ALS Ice Bucket Challenge.
ALS ACT is aimed at accelerating diagnosis, speeding development of new treatments for people with ALS and removing roadblocks to finding a cure for ALS.
How ALS ACT advances the search for a treatment for ALS
- Supports development of neuroimaging tools as potential ALS biomarkers, a key unmet need in trials.
- Supports projects focused on decreasing the production of misfolded proteins and reversing neuroinflammation, two major contributors to the disease process
- Supports NeuroBANK™, a central repository for clinical research data in ALS that will host, curate and disseminate proteomic, genomic and clinical data. NeuroBANK™ serves the New York Genome Center (NYGC), Genomic Translation for ALS Care (GTAC) and Answer ALS strategic initiatives, along with many other projects.
- Supports the NEALS Biorepository, which stores collected study participant samples (blood, cerebral spinal fluid, extracted DNA, urine, etc.) available to ALS researchers.
- Supports phase IIA pilot clinical trials with relevant biomarkers aimed at developing novel ALS treatments.
- Supports a gene therapy study by Robert Brown, M.D., Ph.D. that uses viruses to deliver gene therapy agents targeted at mutated ALS genes.
- Supports a TDP43 PET Tracer Grand Challenge to generate a TDP43 biomarker to track TDP43 aggregation, in partnership with ALS Finding a Cure®.
ALS Finding a Cure® was founded in 2014 by noted philanthropist and Founder and Chairman of Conair, Leandro (Lee) Rizzuto, as a tribute to Christie Rizzuto, Lee’s daughter-in-law who was diagnosed with ALS in 2009 at the age of 41. Under the joint leadership of Lee Rizzuto and Peter N. Foss, ALS Finding A Cure® is focused on identifying the gaps in the scientific understanding of ALS that are preventing the development of a cure.
Top ALS investigators contribute to ALS ACT, including:
- Merit Cudkowicz, M.D., MSc, Massachusetts General Hospital in Boston
- Robert J. Brown, Jr. M.D., D.Phil., University of Massachusetts in Worcester, Mass
- Stanley H. Appel, M.D., Houston Methodist Hospital System in Houston
- Nazem Atassi, Ph.D., University of Massachusetts in Worcester, Mass
- Clive Svendsen, Ph.D., Cedars-Sinai in Los Angeles
- Nadeem Ishaque, Ph.D., and Thomas Gentile, M.B.A., GE Healthcare