From Diagnosis to Data: Ben LeNail on the Future of Neurotechnology

Neurotechnology is often driven by academic discovery or engineering ambition. For Ben LeNail, now an advisor to multiple biotech and neurotechnology companies, the path into brain health was deeply personal — and has since evolved into a career focused on helping companies navigate patient engagement, clinical strategy, regulation, and commercialization across complex neurological markets.

After living through a rare neurological diagnosis himself, Ben has spent more than a decade working across research advocacy, medical innovation, and advisory roles at the intersection of neuroscience, AI, and patient-centred technology. In this conversation, he reflects on his journey from computing and renewable energy into neurotechnology, the gaps he sees in how neurological disease is diagnosed and treated today, and why the next phase of progress will depend on translating data into real-world impact.

Interview by Chay Carter, founder of Carter Sciences.

Your journey into neurotechnology is deeply personal. Can you share how you first became involved in brain disease and neurological research?

My intersection with neurology really started about fifteen years ago, and it wasn’t academic — it was personal. In my late forties, I began experiencing neurological symptoms, mostly around gait and motor control. I’d always been healthy, athletic, and outdoorsy, so it was immediately clear to me that something was phenomenally wrong. What followed was a long diagnostic odyssey. Even at top institutions like Stanford and UCSF, it took nearly two years to reach a diagnosis, which really speaks to how difficult rare neurological diseases still are to identify.

I was eventually diagnosed with a rare neurological condition — adrenoleukodystrophy (ALD) — caused by a single gene mutation. It primarily affects males, it’s X-linked recessive and it has two distinct phenotypes. When the disease presents in young boys, it’s devastating — it goes straight to the brain and is typically fatal within a year or two. If you survive childhood, the disease often manifests later in adulthood as a progressive spinal disorder. That’s the phenotype I have. It means I’m now barely ambulatory, and while my symptoms are spinal, the disease still affects the brain and shares many underlying pathologies with other neurodegenerative conditions like Parkinson’s, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS).

Living through that process, even with access to world-class healthcare, gave me a very different perspective on just how slow, fragmented, and difficult neurological diagnosis and treatment can still be.

“ Even at top institutions, rare neurological diseases are still difficult to identify. ”

Before working in neurotechnology, you had a long career in other industries. What did that path look like?

I started my career in the late 1980s in computing, both software and hardware, and worked in that field for about twenty-five years. I did very well there, but over time I started to feel a bit tired of the space and ready for a change. I made a professional pivot and spent the next decade working in solar energy. I was part of a great company developing novel solar photovoltaic technologies, and that chapter really came to an end around the time of Covid-19.

At that point, I realized I’d accumulated a deep amount of knowledge around medical research, rare disease, neurology, and drug discovery and development — largely through lived experience. It felt natural to apply that understanding more directly, so I shifted into working full-time as an advisor and investor in the medical and neurotechnology space.

You’ve also been heavily involved in non-profit and research advocacy. What role has that played in your journey?

After my diagnosis, I went online and found an incredible doctor in France. I grew up in France, so reaching out to him felt both comfortable and familiar. He was the physician who discovered the gene mutation back in 1992. In the early ’90s, a lot of genetic diseases were finally being traced back to specific gene mutations, and he was at the centre of that work.

I contacted him, and he invited me to Paris. While I was there, I also took part in a patient meetup. When I came back to the US, I eventually connected with a specialist here, and together with a small group of neurologists, we decided to start what became the first real US national foundation focused on this disease. At the time, there were a few small family-led foundations, but they were very limited in scope — things like bake sales, 5K runs, or raising money to sponsor a wheelchair for a child. They weren’t really driving research forward. So, in 2013, we founded ALD Connect, and I served on the board for more than a decade as it grew into a large national foundation.

Alongside that, I also joined the American Brain Foundation, which is a spin-off of the American Academy of Neurology, and is the largest US foundation focused on brain disease — particularly adult conditions like dementia, Parkinson’s, and MS. I also fund research directly at UCSF, the MIT Picower Institute, and Stanford, focused on brain disease more broadly. Whenever possible, I try to support work that connects back to ALD, my own condition, and see whether those insights can lead somewhere meaningful.

From your perspective as an advisor and investor, where is neurotechnology today — and where is it still falling short?

In neurology and psychiatry as well, we’re still very far behind. We’re probably thirty years behind fields like oncology. And don’t get me wrong, cancer is still devastating — I have friends who have recently died from it. But the reality is that over the past two decades, outcomes in cancer have undergone a real sea change, driven by better diagnostics, precision medicine, and immunotherapy. We’re not there yet in neurology and psychiatry. The unmet needs are enormous, starting with dementia and Alzheimer’s disease, which is now at the level of a national crisis. That said, I do think we’re on the cusp of some major breakthroughs, in understanding causation, prognosis, and, ultimately, in developing effective therapies.

What excites me most right now is the potential of AI to generate deeper biological insight. Human biology is incredibly complex, and you still have to do the hard work of testing drugs in people to see if they’re safe and effective. But AI can help us identify better targets, understand mechanisms of action, and map disease pathways much more precisely.

“ Outcomes in cancer have undergone a real sea change… We’re not there yet in neurology and psychiatry. ”

I’m also very excited about devices, particularly those that can have a meaningful impact quickly and do so in a non-invasive way. That includes transcranial stimulation, neuromodulation, and other neurostimulation technologies, as well as assistive devices in the broader brain–computer interface category. These are tools that allow people who are partially locked in to move, to communicate, and to re-engage with the world. That’s an extraordinary improvement in quality of life and a real way to alleviate suffering.

And finally, I do believe we’re going to reach a breakthrough in dementia and Alzheimer’s disease — especially if we can identify people at high risk early and intervene with prophylactic treatments that prevent plaque and tau tangle buildup, allowing them to maintain function without cognitive decline.

We’re seeing rapid growth in consumer-facing neurotech, wearables, and monitoring tools. How do you view that trend?

In general, more information is better. The real challenge is interpretability — understanding what all these data streams from wearables and sensors are actually telling us. Data on its own isn’t useful unless it can be interpreted, turned into something actionable, and clearly assigned to someone who can act on it. Right now, that’s hard. Clinicians and care teams are already overwhelmed, and integrating continuous data into existing clinical systems and workflows is a major challenge. Simply generating more signals doesn’t solve the problem if no one can make sense of them in real time.

Longer term, the hope is that AI sits at the centre of this ecosystem. Imagine an elderly person at home, supported by wearables and environmental sensors that continuously monitor wellbeing. Based on what the system detects, it can make adaptive adjustments in real time — to lighting, physical activity, medication, nutrition, mood support, or social engagement. That’s the future I find compelling: People feeling monitored in a way that’s supportive — not intrusive — where the information being collected is actually useful, interpreted correctly, and acted upon to improve daily life.

“ There’s increasing openness to evidence generated outside of traditional clinical trial structures, which is a meaningful shift. ”

Finally, what advice would you give to founders building in neurotechnology today?

A slightly contrarian view I have is that, while a lot of people are understandably unsettled by the current level of US governmental and regulatory uncertainty — some might even call it chaos, there’s also a significant opportunity embedded in that moment. For better or worse, the current administration appears genuinely open to new and disruptive technologies, especially those that can be used by patients in real-world settings for both chronic and acute conditions. There’s increasing openness to evidence generated outside of traditional clinical trial structures, which is a meaningful shift.

In many ways, this creates a kind of tabula rasa, a clean slate that entrepreneurs can take advantage of. That applies not just to regulatory approval, but potentially to reimbursement, adoption, and integration into the healthcare system. With the acceleration of AI and what I’d describe as a more forward-looking posture from regulators, the opportunity to get truly novel technologies deployed and adopted may be greater now than it has been in a long time.

Also published on Medium via NeuroTechX

Carter Sciences delivers personalized talent strategies backed by 20 years of international headhunting experience. We support growth-stage startups with tailored solutions and cost-effective fee structures, so you can scale without impacting your runway.

Specialisms include: Neurotechnology, Neuromodulation/Stimulation, Brain-Computer Interfaces, Wearable Devices, Neurosurgical Technology, and Private Equity/Venture Capital.

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