Exploring How a Tech Founder Is Leveraging AI in the Battle Against ALS
The Journey of Indu Navar: Innovating ALS Care
Background
Indu Navar, the CEO and Founder of EverythingALS, has been at the forefront of technological innovation for many years. Her impressive educational background includes degrees in electrical engineering and computer science. Indu started her career at NASA and played a crucial role in the creation of WebMD. After running a successful company for 14 years, she transitioned into investing and advising. Her passion for big data and analytics has shaped her career and led her to focus on important health issues.
Her husband, Peter Cohen, also had a notable career, spending around 18 years at Amazon, where he was instrumental in developing Amazon Mechanical Turk, a platform for crowd-sourcing tasks. The couple enjoyed a successful life together, contributing to meaningful technological advancements.
The Diagnosis
Everything changed when Peter began experiencing concerning symptoms. Initially dismissed as a minor ankle issue, it took two long years to diagnose him with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease. The lengthy and expensive diagnostic process, which cost over $100,000, revealed a troubling reality: every 90 minutes, someone is diagnosed with ALS, often receiving the same bleak prognosis that has not changed in 80 years—typically 2 to 5 years to live after the first symptom.
Indu was taken aback by the inefficiencies in the diagnostic process and the outdated methods used to identify such a devastating condition. It became clear that many patients suffer without a proper diagnosis, highlighting a pressing need for change in the medical approach towards ALS.
Founding the Peter Cohen Foundation
Following Peter’s diagnosis in 2018 and his subsequent passing in 2019, Indu was motivated to take action. She established the Peter Cohen Foundation with a vision of improving ALS care. The foundation aims to honor Peter’s legacy by striving to find a cure for ALS and to ensure that other families do not face the same plight they did.
Technology Innovations in ALS Care
One of the primary goals of Indu’s work with the Peter Cohen Foundation and EverythingALS is to leverage technology to improve diagnostics and treatment for ALS and other neurodegenerative diseases. Here are some key aspects of their approach:
Advanced Monitoring Techniques
Sensor Utilization: EverythingALS employs sensors to monitor various physical functions in patients, including speech, breathing, walking, and fine motor skills. This data is crucial in understanding disease progression.
- Predictive Analytics: By gathering this data, researchers can predict the future health status of patients at intervals of 3, 6, 9, or even 12 months. This proactive approach allows for earlier diagnosis and better patient management.
Evolving Patient Assessments
Traditional methods of evaluating patient progress rely on subjective measures, often requiring patients to self-report their condition. Indu points out that some questions are not relevant for all lifestyles—her family, for example, is vegetarian, making questions about cutting food irrelevant. The focus is to develop tools that adapt to diverse patient needs and can yield more accurate outcomes.
Citizen-Driven Research
Indu emphasizes the importance of involving patients in research. By directly engaging with individuals affected by ALS, EverythingALS collects data from a broad range of participants. This “citizen-driven research” enables a more comprehensive understanding of the disease and its impact.
Support Network for Patients
The EverythingALS app provides a platform for patients to connect with each other. It also includes access to a specialized AI tool designed exclusively for ALS concerns. This AI is distinct from general chatbots like ChatGPT and is built on a reliable dataset gathered from extensive expert consultations and patient interactions.
Future Endeavors
Currently, EverythingALS is expanding its efforts beyond ALS to include other neurodegenerative diseases, starting with Alzheimer’s and soon Huntington’s and Parkinson’s diseases. Indu Navar’s commitment to this cause is driven by the desire to fill inadequacies in how neurodegenerative diseases are managed and treated, creating a brighter future for patients worldwide.
