Answer ALS is an initiative spearheaded by Steve Gleason to challenge ALS researchers to come up with a solid plan to find a cure for ALS. Its strategy includes two impact goal arms that help people living with ALS live more productive lives and to ultimately bring top ALS researchers together to find a treatment or cure. Projects funded as part of other strategic initiatives, ALS ACT and the Neuro Collaborative, form an important foundation for Answer ALS.
The ALS Association Commitment
The ALS Association contributed to the development and business plan for Answer ALS, and has a partnership with Team Gleason and others to advance this initiative (see below).
Answer ALS has two impact goals:
- Immediate impact: To find ways to help people living with ALS to live more productive lives. Initiatives include supporting affordable assistive information technologies and services to allow people with ALS to live the most productive life possible without financial burden.
- Ultimate impact: Funding a coordinated, collaborative effort to bring together the world’s leading ALS researchers to work toward treatments or a cure in the next 5-10 years.
How The ALS Association supports ANSWER ALS
- Sequences whole genomes (read DNA) at The New York Genome Center of samples collected from participants.
- Leverages The ALS Association funded NeuroBANK™ as an integral part of the program.
- Provides building blocks to the generation and analysis of ‘large data’ through NeuroLINCS and ALS ACT.
How ANSWER ALS advances the search for a treatment for ALS
- Combines genomics (study of DNA), transcriptomics (study of messenger RNA (mRNA)), epigenomics (study of gene modifications that do not change the genetic sequence), proteomics (study of proteins), lipidomics (study of lipids or fat cells), generation of induced pluripotent stem cells (iPSCs) and deep clinical phenotyping (extensive overview of a patient’s clinical history and observable traits) to discover ALS disease subtypes and response to drugs.
- Uses a personal monitoring device and a smartphone app to collect clinical data from participants 24/7.
- Analyzes data on a large scale to ultimately identify new ALS druggable pathways and biomarkers and to design more efficient clinical trials.
- Jeffrey Rothstein, M.D., Ph.D., Johns Hopkins University, Baltimore
- Clive Svendsen, Ph.D., Cedar-Sinai Medical Center, Los Angeles
- Merit Cudkowicz, M.D., MSc., Massachusetts General Hospital, Boston
Answer ALS clinic sites include: Massachusetts General Hospital, Cedar Sinai Medical Center, Johns Hopkins University, Ohio State University, Emory University and Washington University St. Louis.
As of March 2016, 46 patient samples were collected out of the goal of 1000 ALS participants.
View the NEALS webinar here for a progress report in May 2016.