Hillel's Tech Corner: NeuroSense: What ALS patients deserve

NeuroSense Therapeutics is a clinical stage drug development company offering ground-breaking treatment for ALS patients, as well as other neurodegenerative diseases.

NeuroSense Theraputics. (photo credit: Courtesy)
NeuroSense Theraputics.
(photo credit: Courtesy)
I have to be honest, every time I hear someone speak of a medical condition and how there is no cure, it boggles my mind. We have autonomous cars, advanced AI, cutting edge machine learning and so much incredible technology, how is it that we cannot develop treatment for some of the most severe medical conditions out there?
Of course, there are scientists and entrepreneurs working on this around the clock, whether it’s cancer, ALS, or many other medical conditions that need a cure, but we still have not cracked it and that both upsets and confuses me.
For this reason, when an old friend, Donna Griffit, who works with start-ups to help them tell their story more effectively, told me about NeuroSense Therapeutics, a company developing a cutting-edge cure for ALS patients, I had to hear more.
NeuroSense Therapeutics is a clinical stage drug development company offering ground-breaking treatment for ALS patients, as well as other neurodegenerative diseases.
If, somehow, you are not familiar with ALS, sometimes referred to as Lou Gehrig’s disease, it causes rapid deterioration in motor function, with a life expectancy of two to five years. I have personally seen the suffering this horrible disease causes both to the patient and the family. Stephen Hawking, who died in 2018, is arguably the most well-known and long-lived ALS patient. There are approximately 13,500 people in the US with ALS today, according to the CDC, and around 600 in Israel, according to the Hadassah Medical Center.
I spoke with Alon Ben-Noon, the cofounder and CEO of Neurosense, who brings years of experience in the field to the table having run a successful consultancy firm that worked and collaborated with many leading pharmaceutical R&D companies, including Mediwound, Chiasma, Teva, NeuroDerm and others. He is joined by an incredible team and advisory board consisting of multidisciplinary professionals with years of experience with drug development and ALS clinical trials. Ninety percent of the team are women scientists, researchers and technologists, which is a rare and refreshing sight in the tech and bio ecosystem.
When I asked Alon what the inspiration to establish Neurosense was, he told me about a life-changing meeting he had in 2016: “Shay Rishoni was diagnosed in 2010 with ALS – before that he was an Ironman – and a businessman. After his diagnosis, like any obstacle he had encountered in life, he decided to fight ALS. Shay joined an organization called Prize for Life as CEO – they put out challenges and award prizes to teams advancing solutions for ALS patients.
When I met him he was completely paralyzed, communicating via a computer – like Hawking. I was blown away by him – I couldn’t understand how [he] accomplished WAY more in a day than I could with his limitations. I decided at that moment that I was joining his fight to find an effective treatment for ALS, and Neurosense was born. I was fortunate to gather a task team of top experts I was connected to through my years in the biomed industry, who came together out of a sense of purpose to find a treatment for ALS.”
NeuroSense’s science is based on research from several leading global academies that discovered pertinent pathological pathways of ALS. Alon’s team started the initial research into the relevant targets for treatment and honed in on a few main targets they felt could potentially lead to a treatment. They started searching for existing FDA-approved molecules, or drugs, that could address these targets and cut the time to a treatment significantly, effectively halting the progression of ALS. It came down to 2 molecules – and the company’s hypothesis was that they could work synergistically with the right formulation. They needed a relevant model, or animal, to test their hypothesis on.
As they were examining alternatives, Alon was contacted by an entrepreneur named Ariel Gordon, whose wife had been diagnosed with ALS and had also committed himself to finding a cure. He found a lab in the Arava desert in Israel, led by Dr. Niva Russek-Blum, specializing in studying treatment for ALS in zebrafish. Apparently, zebrafish have over 70% similarity in human coding genes, tissues, organs and physiological processes, as well as striking similarities between the main structure of the brain, the immune system and the peripheral nervous system – including motor-neurons and neuromuscular junctions – making it highly relevant for ALS studies.
Gordon learned of Neurosense’s research and offered to connect them to the lab and fund the research. They commenced the preclinical studies late 2017 – starting with behavioral experiments with outstanding results, followed by further examination of morphological effects. In tandem, they validated their results with an additional model, in collaboration with McGill University. They called their emerging drug Prime-C – a final gesture to Rishoni, whose name in Hebrew means prime.
Based on the encouraging preclinical results, NeuroSense filed a patent, and was granted an Orphan Drug Designation from the FDA and the EMA for the use of PrimeC in ALS patients. This happened much faster than anyone had dared to hope.
Two clinical studies were then initiated to evaluate the benefit of PrimeC for ALS patients. A Phase IIa study is being conducted in Israel at Tel-Aviv’s Sourasky Medical Center by Prof. Vivian Drory, and a complementary study is being conducted in the US at The Barrow Neurological Institute by Prof. Jeremy Shefner, a world renowned clinician. The interim results show promising trends of efficacy, safety and tolerability. These preliminary trends are very encouraging when seen in a small study, and the company plans to move forward towards a pivotal clinical trial, to evaluate the drug’s efficacy and ability to slow disease progression and improve quality of life.
Since there is a huge unmet need in ALS, and due to the nature of PrimeC, the professional team and the impressive advances of NeuroSense in a relatively short time, the company believes that if all goes according to plan, it will be able to bring the drug to market in under 4 years – a very short time for drug development.
In order to proceed, the company is now fund-raising in a Pre-IPO round, both from private investors and Venture Capitals, aiming to solve ALS as well as Alzheimer and Parkinson’s. All of their achievements to date were accomplished with $2.5 million in capital raised, including an equity crowdfunding campaign.
I had the opportunity to speak to a friend, Hindy Cooper Ginsberg, who sadly is very familiar with ALS. “My sister, Devorah Schochet, has been battling ALS for 8 years with a smile, because that along with her eyes, are some of the only muscles left that work.
She was diagnosed when she was only 38 and now lives on machines; only leaving the house for field trips to the hospital every few months when things go more wrong than usual. Even more horrific than what Devorah has to endure every day is the fact that this is not new to her and our family. Our mother died 14 years ago after too short a battle with this same disease and everything Devorah is going through is eerily familiar. Over 10% of ALS cases are familial and families have to watch their loved ones suffer over and over again.”
All I can say is, after having witnessed the horrible suffering this disease causes, I pray and hope that NeuroSense hits the market and soon. In 2021, there is no reason we should see such suffering when we have the brains and the tools to treat and cure some of humanity’s worst medical conditions.