EverythingALS Launches the Vision 2030 AI Hub: Charting the Path to an ALS Cure and Advancing Neurodegenerative Disease Research

SAN FRANCISCO, March 12, 2024 (GLOBE NEWSWIRE) -- EverythingALS, a leading force in the fight against Amyotrophic Lateral Sclerosis (ALS), today announced the Vision 2030 AI Hub, an innovative platform that will accelerate ALS research using Artificial Intelligence (AI), Machine Learning (ML), and data science to eradicate ALS and restore lost motor function to those afflicted by neurodegenerative disorders.

Spearheaded by technology industry leaders Indu Navar, EverythingALS founder and CEO, and Bill Nuti, former CEO of NCR and now chairman of EverythingALS, the Vision 2030 AI Hub is a global collaborative and technology enabled research platform. To launch Vision 2030, EverythingALS has made gifts to two institutions driving innovative, ground-breaking work in this field: MIT, led by Professor Ernest Fraenkel, and Massachusetts General Hospital, led by Professor Merit Cudkowicz.

Revolutionizing ALS Research with Urgency:
The Vision 2030 AI Hub is a transformative AI enabled platform that will unite researchers with the supply chain of comprehensive data, technology, and industry partners that can rapidly translate breakthrough basic science discoveries in repair and regeneration into life altering drugs. Beyond researchers, it will include leading pharmaceutical and biotech companies, academia, hospital clinics, government agencies, and other private foundations dedicated to finding a cure.

The “Hub” is part of the Vision 2030 initiative, designed to address the challenges that have adversely affected the development of effective treatments over the past eight decades.

“ALS research, in both the private and public sectors, is severely impeded by slow and cumbersome funding processes, and the limited availability of grants due to ALS's lower prevalence. This scarcity of resources force researchers to spend considerable time seeking financial support, often through charitable means. However, the landscape of philanthropy generally favors more common diseases, leading to a consistent underfunding of ALS research. This stark reality underscores a pressing need for a radical change in approach to ensure that no promising research is left on the sidelines, and we accelerate the process of developing a cure. Vision 2030 is the right operating model to address these challenges,” stated Nuti.

"The Vision 2030 AI Hub will strategically harness the power of advanced technology and collective clinical expertise to blaze a trail of meaningful progress,” said Navar. “We are unified in our conviction that AI is not just a technological breakthrough—it is the beacon of hope for medical research and will profoundly redefine the future of healthcare and medicine. Along with a solid operational plan, we have reached a pivotal moment in history, where quantum advancements in science and technology can be applied to the effort and transcend human limitations.”

Key Features of Vision 2030 AI Hub:

• First-of-its-Kind Network: The Vision 2030 AI Hub pioneers an ecosystem harnessing cutting-edge advancements in AI, Generative AI and Large Language Models (LLM). Positioned at the forefront of innovation, the hub is poised to accelerate the discovery of a cure for ALS while illuminating the research pathway for Alzheimer’s, Parkinson’s, and Frontotemporal Dementia.
• Focused Repair and Regeneration Research: The Hub provides a specialized environment for targeted and efficient research, concentrating on repair and regeneration—a highly focused approach to root cause(s) identification.
• Extensive Data Lake: The Vision 2030 AI Hub aims to establish the most extensive data lake on repair and regeneration research, creating a rich repository for researchers to explore and leverage.
• Frictionless Operating Framework: Amongst several unique features, the Vision 2030 AI Hub will eliminate the burden of the grant application process and funding, provide researchers with advanced tools and data to conduct research, and a dynamic consortium of partners who will streamline the process of discovery to drug development, ensuring that curative therapies reach those in need swiftly.

The Vision 2030 AI Hub will have a laser focus on "repair and regeneration," aiming to distinguish the organization in the ALS research landscape.

"Across the annals of medical research, progress often emerges in fragments, illuminating the path piece by piece. Yet, it is not until these fragments unite that we witness the dawn of a transformation. The Vision 2030 AI Hub epitomizes this momentous convergence—where the cumulative advances in ALS research and technology coalesce, heralding a new epoch of hope and discovery. This is the nexus where our collective strides become a giant leap for mankind,” said Dr. Merit Cudkowicz, EverythingALS Vision 2030 AI Hub steering committee chair, Chair of Neurology and Director of the Sean M. Healey & AMG Center for ALS at Mass General and the Julieanne Dorn Professor of Neurology at Harvard Medical School.

Breaking Down Barriers:
Addressing formidable barriers in ALS research, the Vision 2030 initiative dismantles obstacles like insufficient funding, technology infrastructure, and a lack of data science expertise. The consortium cultivates interdisciplinary collaboration, gathering extensive datasets, and ensures transparency in sharing valuable insights.

“EverythingALS has a singular yet powerful mission -- to dissect and understand the various subtypes of ALS and uncover their causes. This knowledge is the cornerstone upon which targeted and efficacious treatments will be built,” said Ernest Fraenkel, PhD Professor Biological Engineering at MIT. “These efforts are designed to catalyze a paradigm shift in ALS research, with the goal of discovering a cure.”

Accelerating Progress:
While EverythingALS has made extensive progress with digital health tools, biomarkers and an AI platform, the urgency lies in funding research focused on finding a cure and not just managing symptoms. The Vision 2030 AI Hub motivates giving and fundraising, showcasing an innovative operating model that emphasizes urgency in tackling ALS and other disorders.

For more information about EverythingALS, Vision 2030, and the AI Hub visit http://www.v2030.org or email us at [email protected].

About EverythingALS:
Since 2020, EverythingALS has been dedicated to advancing research, fostering innovation, and offering support for individuals and families affected by ALS. EverythingALS is a non-profit 501(c)(3) organization that operates under the Peter Cohen Foundation. EverythingALS has established a well-connected ALS community network comprising 7,000 subscribers, 1,400 research participants, and over 300,000 visitors to its YouTube channel from 50 countries. Furthermore, EverythingALS collaborates with a consortium of pharmaceutical companies, sharing research findings and insights through its unique citizen-driven research with an open innovation model. With a strong emphasis on collaboration and data-driven approaches, EverythingALS is committed to accelerating the development of curative therapies for ALS, aiming for a world free from the burdens of ALS. http://www.everythingals.org

In July 2023, Everything ALS merged with CureALS, a pioneering non-profit organization committed to funding groundbreaking research and empowering individuals impacted by ALS. The merger between EverythingALS and CureALS represented a significant leap forward in the pursuit of a cure for ALS and FTD. 

Media Contact:
Erin Farrell Talbot
Farrell Talbot Consulting
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