A couple of months ago, Assay Depot and BioCurious wrapped up it’s first Open Science Challenge. We had some great proposals submitted, but ultimately, only two winners could be selected. We want to share the great works that our winners are working on and how they got there. We look forward to tracking their project and watching it develop. Learn more about Ryan Bethencourt, who is working on fighting ALS, and how he is working with the open science community to achieve his goal. Look for our second winner’s interview tomorrow!

Can you provide a quick background about yourself?

I thought I’d start off first with something a little more personal and then dive into the founding of Halpin Neurosciences, there’s something deep within me that attracts me to difficult challenges that others would walk away from, I grew up partially in some very rough urban neighborhoods in Miami and I managed to escape being a statistic of urban poverty and street violence as a kid, that experience and mindset has stayed with me throughout my life and it’s how I view my work and life challenges too. Biotech and science are hard, it’s the real world and sometimes, it’s brutal but yet we have to keep going regardless to improve the human condition. I view the biohacking movement as an extension of that philosophy, to make the world a better place for ourselves and others regardless of how difficult that challenge might be.

Halpin Neurosciences was founded by Les Halpin (a successful serial entrepreneur, angel investor and ALS patient), Damian Crowe (the CEO of Obilisk Supplier Finance and former biotech CEO) and I (Ryan Bethencourt, part-time CEO, Translational medicine specialist, Geneticist/Biohacker, and part of the original movement which led to the founding of Biocurious) due to the frustration that our friend and colleague Les was having in getting access to basic treatment options and cutting edge research. At the dawn of genomic medicine and rapidly advancing biotechnologies, there was and still unfortunately are very few therapeutic options for patients with ALS (Lou Gerig’s disease) which for such a difficult and terminal disease has had very little progress, we decided, if not us, then who and founded Halpin Neurosciences in Dec 2011 with seed funding from Les. 

Since then we’ve made progress in getting Les’s genome sequenced and he’s in the process of getting access to novel emerging therapies and we’ve also started to build a team of fellow ALS patients to help us develop these therapies at Halpin Neurosciences. My primary collaborator and partner in the search for novel/promising therapies is Eric Valor, who is a self-taught Information Technology professional forced into retirement after a 20 year career due to his ALS diagnosis (which he has fought and still manages to be highly productive despite his ALS induced quadriplegia). His passion for IT started in 1980 and has since shifted to learning neuroscience and hacking medicine with one his recent initiatives to self treat with a novel therapy, which was covered in Forbes and WSJ as well as his work as a head of research at Halpin Neurosciences. Together, Eric and I have been working with the broader ALS community and some of the pioneers in this area to try to advance options for patients (and battling the high risk/high cost of drug development). This has been a really tough endeavor for all of us from a scientific and financial perspective but it’s work worth doing and we hope it will bring some much needed, effective therapies for patients who currently have little to no options!

Why are you interested in your research project? Have you tried pursuing it in the past?

I think we’re at a unique period in history of rapid technological evolution in the Biotech industry and I think as both a Biotech/Pharma industry insider and part of the new generation of biohackers I can help catalyze the technological/business model disruption that we need in the biotech industry to develop therapies for underserved patients with serious and tough diseases like ALS, quicker, faster and cheaper but ultimately I want to use what we’re doing in the biohacker community to improve the human condition and continue in the footsteps of the giants of medicine and citizen science that have fought disease through ages. 

I have been involved in many new cutting edge biotech research projects over the years with my biotech/pharma customers to plan and design clinical studies that translate their potential therapies into the clinic. I was also the part time COO at Genescient Pharma and continue to advise them informally as their cutting edge aging related disease targets are identified and tested (based on still evolving genomic technologies and analysis). Eric, my colleague, motivator and primary collaborator is hoping to personally benefit from this project as he is an ALS patient. He’s never done anything quite like this before but the pace of current therapeutic development is much too slow so he decided to take action and hopefully make a significant difference to his life and the life of ten’s of thousands of other patients!

What does winning the prize mean to you?

This prize to me and the Halpin Neurosciences team is more than just about the research prize money (which is definitely very appreciated and helpful to a small seed funded biotech company like ours). It’s also an important validation for us and a recognition that there are others with us in the fight to make a difference in the hard battles to make life better for our fellow human being’s that are suffering. In Silicon Valley, it sometimes seems like the only start ups which get attention (and often funding) are those that have a quick upside/flip potential but to us ultimately, we built Halpin Neurosciences to make a difference in the lives of patients suffering from ALS and the financial success aspects are secondary!