CureALS marks Lou Gehrig's Day, amplifying awareness and propelling advanced research and global collaboration.
CureALS, a pioneering nonprofit organization dedicated to eliminating ALS (Amyotrophic Lateral Sclerosis) and other complex neurodegenerative diseases such as Alzheimer’s, Parkinson’s, and Frontotemporal Dementia, has officially launched today. The organization's founder, former NCR Chairman and CEO Bill Nuti, who retired from his position in 2018 after being diagnosed with ALS, is on a mission to create a first of its kind, start-up where researcher support, public/private partnership, data sourcing and the use of artificial intelligence (AI) technology is the core of the program.
Nuti, who spent his entire career in the technology industry, at companies including Cisco Systems and NCR, where he most recently served as chairman and CEO for nearly 13 years, is committed to the next chapter of his leadership with the creation of CureALS – hoping to impact and revolutionize the scientific research field by partnering with the medical industry, government, and business community, leveraging cutting-edge technologies like AI and quantum compute to overcome the barriers preventing the discovery and efficient administration of curative therapies.
Also known as Lou Gehrig's disease, after the famous New York Yankee baseball player who was diagnosed with the disease in 1939, ALS is the most devastating and deadliest among Neurodegenerative Disorders with diagnosis resulting in a 100% mortality rate, and a mean survival rate of ~5 years, with 60% of patients dying within three years. According to the National Institute of Health, (NIH) every 90 minutes, someone receives the devastating diagnosis of ALS, and one in 300 people will die of the disease in North America alone. In addition, the number of ALS cases worldwide is projected to soar from 223,000 in 2015 to a staggering 377,000 in 2040, representing an increase of 69%. In the words of one of the foremost neurologists and ALS researchers, Dr. Merit Cudkowicz, chair, Department of Neurology Mass General Hospital, “This is an epidemiologic crisis.”
“The third annual Lou Gehrig Day takes place this week on June 2 – the week that Gehrig passed away from ALS 82 years ago, but yet, there is still no cure for ALS,” said Nuti, founder, CureALS. “The vision of CureALS is to find a cure for the disease as it is not incurable, but severely underfunded.”
Nuti added, “We are committed to eradicating ALS and other neurodegenerative diseases by leveraging the power of technology, corporate social responsibility, conscious capitalism, and donations from people who care. And, through our partnerships with innovative and generous companies, which we will be announcing soon, we will make a meaningful contribution to this cause and demonstrate our commitment to making a positive impact on humanity."
Underfunded but not Incurable
In 2014 the Ice Bucket Challenge raised an impressive $115 million for ALS research and sparked widespread public awareness. In stark contrast, Hollywood's annual Stand Up to Cancer event, which takes place every year, generated over $143 million in just 24 hours, surpassing the Ice Bucket Challenge's total contributions and exceeding the NIH’s annual spending on ALS research. With adequate funding, technological advancements, and focused efforts, ALS can be conquered and a quest for a cure could potentially unlock solutions for Alzheimer's, Parkinson's, and numerous other neurodegenerative conditions.
"CureALS represents a beacon of hope for individuals and families affected by ALS, offering a path towards a cure and shedding light on the future of medical research,” said Ed Rapp, advisor to CureALS and former group president of Caterpillar, Inc. After a 37-year career with Caterpillar, Rapp retired in July 2016 after his diagnosis with ALS and has been actively engaged in the world of ALS, focused on finding a cure and improving lives for other ALS patients. “Years in industry taught me that great innovation comes from great collaboration. Bill is committed to building an open source, collaborative platform to unravel the mystery that is ALS.”
Breaking down silos
CureALS’ overarching goal is to break down the silos that have hindered progress in the medical industry. At the core of CureALS strategy is the utilization of AI to process vast amounts of research and data, enabling in-depth analysis of omics, biofluids, neuroimaging data, clinical records, treatment, and data from diseases that share common biology with ALS, such as Alzheimer’s. Artificial intelligence is the most consequential technological development in history and will have a profound impact on humanity. The (AI) technology has matured and is progressing at an extraordinary and unimaginable speed. It is a centerpiece discussion in corporate boardrooms, national security strategy meetings, and is reshaping mainstream discourse with breakthroughs in generative AI, large language models (LLMs), and conversational AI. OpenAI’s ChatGPT, a vanguard in the LLMs space, is democratizing AI and poised to revolutionize a multitude of industries, with healthcare at the forefront. By leveraging advanced technology for the greater good, CureALS aims to accelerate the pace of scientific discovery.
While progress has been made in the past decade, traditional methods of developing therapies and finding a cure remain slow, underfunded, and inadequately efficacious. CureALS aims to fill the gaps and remove obstacles by providing targeted and meaningful funding to promising researchers and providing access to powerful technology and expertise. CureALS will provide researchers with access to a transformative AI driven platform, aptly code named after Lou Gehrig's legendary uniform number, "Number Four," in combination with our data science and computational biologists, will enable researchers with the ability to solve once intractable problems, and undertake what was considered impossible analysis, fast tracking our progress towards a cure.
"CureALS is driven by the belief that with sustainable research funding and a new operating model that leverages advanced technology like AI, we can find a cure and discover effective therapies for ALS in a hyper-accelerated manner," added Nuti. "We invite the most innovative and gifted companies in the world to join us as corporate sponsors, as well as private foundations and caring people to help eliminate the critical research funding gap and provide technology resources that will propel us towards a cure."
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that afflicts approximately 16,000 people in the United States and a comparable number of patients in Europe. Approximately 5,000 new cases of ALS are diagnosed each year in the United States. The average life expectancy of an ALS patient is approximately three to five years after diagnosis and only approximately 10 percent of patients survive for more than 10 years. Death is usually due to respiratory failure because of diminished strength in the skeletal muscles responsible for breathing. Few treatment options exist for these patients, resulting in a high unmet need for new therapies to address functional deficits and disease progression.
Erin Farrell Talbot