EverythingALS, a California nonprofit formed in 2019, has been conducting the world’s largest study of more than 650 people with amyotrophic lateral sclerosis, or ALS, and healthy volunteers to advance the discovery of digital biomarkers for ALS through speech and video recordings.
September 7, 2021 (Los Altos, CA) – EverythingALS, a California nonprofit formed in 2019, has been conducting the world’s largest study of more than 650 people with amyotrophic lateral sclerosis, or ALS, and healthy volunteers to advance the discovery of digital biomarkers for ALS through speech and video recordings. ALS is a progressive neurodegenerative disease affecting more than 30,000 Americans with no scientific biomarker, no treatment, and no cure. Lifespan is from two to five years after an eventual diagnosis, which is usually made only after ruling out other neurological diseases.
For the first time, significant results of the EverythingALS speech study were presented at the annual scientific speech conference, INTERSPEECH 2021, in collaboration with Modality.ai, which developed the AI technology for assessing neurological conditions through speech and facial gestures. The speech study has demonstrated significant results in its ability to automatically identify biomarkers and assess progression of the disease, thus bringing technology innovations to ALS for earlier diagnosis and expediting support for clinical trials.
A published study published in 2018 by two MIT computer scientists found that trials using biomarkers in patient selection have higher success rates than trials without biomarkers.
For people with ALS, limited mobility makes it difficult to conduct tests, which is why the speech study, which can be conducted remotely at home on any computing device and only takes a few minutes a week, has been so successful in recruitment and retention of hundreds of participants. A virtual assistant – Tina – monitors participants, while behind the scenes, sophisticated AI technology works to assess physical conditions and generate data automatically with a high level of accuracy and consistency. Data is openly shared with researchers while maintaining HIPAA privacy standards.
EverythingALS cofounder and CEO, Indu Navar, a successful high-tech entrepreneur whose husband passed away from the disease, emphasizes that “As a patient-oriented organization, we have experienced caring for our loved ones with ALS firsthand and know why it’s critical we end the disease. Our mission is to discover and deploy initiatives that focus on new ways to diagnose and treat neurological disorders at the intersection of computing and brain science with a focus on ALS.
“We need to reinvent the research platform,” she asserts, “and we are doing this now by rapid patient recruitment, partnerships with pharma and medical device companies, and collaboration with leading medical and research institutions, including MIT, Massachusetts General, and Johns Hopkins.”
In addition to its own research, EverythingALS hosts bi-monthly webinars with prominent researchers and clinicians showcasing their own research and knowledge to help inform and support the ALS community. The patient-centric nonprofit supports the work of other ALS organizations and has been in talks with the FDA to open channels for clinical testing of experimental drugs.
Earlier this year, EverythingALS principal investigators Indu Navar and Dr. Aria Anvar were invited to present a poster of the speech study at the annual Academy of American Neurology.
The nonprofit will be launching a weekly podcast, “Stories and Innovations in ALS,” conducting interviews that share stories of those affected by ALS as well as the efforts of those advancing research and innovation with the goal of finding a cure for this devastating disease.
For more information, contact lisa@everythingals.org.