If every scientific lab in the world operated like Dr. Steffany Bennett’s, I would have no reason to write my forthcoming book, The Cure Trap.
The core argument of my book is that science itself is not the problem. How it is built, and who it is built for, is. I just spent a glorious three days getting to be a sponge in Dr. Bennett’s lab at the University of Ottawa. They showed me what happens when research rejects the 19th-century idea of a monolithic “disease” and instead looks closely at the individual biology in front of them.
The Bennett lab is a world leader in the burgeoning field of neurolipidomics—the study of the structure, function, and dynamics of lipids (fats) in the nervous system. Our brains are roughly 60 percent fat by dry weight, and those fats are not just passive scaffolding. They are a critical and dynamic part of brain health, membrane biology, and cellular signaling. To understand complex, heterogeneous disorders like Parkinson’s, we have to resolve the biology at this level. (For a guided tour of the fat molecules that matter so much in health and disease, check out The Neurolipidomics Laboratory.)
While I was there, I participated in a groundbreaking study and got to run my own blood through a mass spectrometer. Below is a four-minute video that gives a brief window into what that process looks like:
It opens on Dr. Irina Alecu walking us through how the machine filters molecules, before I prep my own plasma samples. We then watch the machine work—robotic arms, pumps, tubing—while research associate Quinton Hake-Volling explains what we see on the chromatogram as my lipids resolve in real time. Finally, Dr. Bennett breaks down why this machine matters so much to modern biology and why this precise, individualized technique is so crucial to resolving complex diseases.
We will need more labs around the world to adopt the personalized, precision focused work that the Bennett lab is doing if we are ever going to be able to make Patient’s tomorrows better than their todays.
While visiting, I gave a talk about why the rest of the biomedical apparatus must fundamentally shift its approach to match this reality. Below is a video of that talk titled The Cure Trap: Why the Most Funded Word in Medicine Keeps Failing Patients…
(Apologies for the bad audio quality however I have pasted the full transcript of the talk below.)
I want to thank the University of Ottawa, the Parkinson’s Consortium, Parkinson’s Canada and in particular Dr. Steffany Bennett’s lab for hosting this event.
Before we begin, a quick note: my dysarthria has been getting worse lately, so if my articulation drops off mid-speech, just nod thoughtfully and assume I’m delivering profound, highly complex scientific truths.
Now, looking out at this room, we have a divided crowd. On one side, scientists, armed with PhDs, pipettes, and grant applications. On the other, patients, armed with tremors, rigidity, and a massive vested interest in what the other side of the room is doing. Normally, the unspoken rule at these events is polite passivity. Scientists offer hope via PowerPoint, and we patients applaud and go back to waiting for a cure.
I’m not here to be polite today.
The word “cure” is a trap. It’s fantastic for fundraising, but it paralyzes actual progress. It gives us permission to tolerate decades of disconnected basic science while ignoring the daily reality of living with this condition.
We seem to have become obsessed with curing a monolithic “disease” that doesn’t even exist. I have visited labs all around the world and seen every type of model used to try to recreate this disease. Not once have I seen anything I would call Parkinson’s disease. What you are working on is not one disease but many different disorders, wearing the same 19th-century name and producing wildly different symptoms in different people.
Yet research treats us as one thing, searching for a single molecular silver bullet to slay a dragon we named in the 19th century. When we force biology into outdated diagnostic boxes, we fail the people sitting in the waiting room. Our urgency shouldn’t be spent chasing an abstract cure for a broad disease category; it has to go to treating the unique, disabling symptoms tearing apart lives today.
What we need is a collision between research and the biological reality of our lived experience. We need patients with a seat at the table, looking at clinical protocols and telling developers and trial designers, “this works,” or “this is physically impossible for someone with advanced symptoms.”
But patient advocacy, as it exists today, is not equipped for this. It places an enormous, unfair burden on people who are already struggling to survive. We are routinely expected to work as unpaid volunteers, offering our expertise and our bodies to fix a system that isn’t serving us, all while battling a progressive condition. Most patients simply do not have the physical or emotional energy to give as much as they would like.
If someone handed me a blank check to help the Parkinson’s community, I wouldn’t fund another trial for a marginally different compound. I would build a global network of intensive therapy centers. But these wouldn’t just be rehabilitation clinics treating the symptoms we actually live with. They would serve as the operational hubs for a new kind of science.
Inside these centers, formalized, fully funded patient advocacy would be integrated directly into the clinical model. We would train patients to understand the science and embed them into the research feedback loop—treating them as compensated experts, not charity labor. My belief, built on a decade spent visiting the best medical institutions in the world, is that a global network of centers based on the Italian Parkinson’s Therapy Centre model would do more for this community today than continuing to fund disconnected basic science organized around two-to-five-year promises.
I am not anti-science. I have personally benefited from rigorous foundational research; Deep Brain Stimulation profoundly changed my life. Basic science is necessary. But we built an apparatus that demands answers in two to five years for a disease that takes decades to reveal itself—and then we act surprised when it produces the appearance of progress instead of progress. It stays tilted toward a theoretical cure for one disease, while the patient who needs help today keeps waiting.
Fixing that requires a behavioral shift, starting right here in this room.
To the scientists and the institutions: stop treating us as data points or free labor. We are your end-users and your reality check. The disease you are studying in a dish is not the disease we live with. Put us on your advisory boards, pay us for our expertise, and let us stress-test your assumptions before you spend millions of dollars and years of your lives.
We’re stuck with each other. Let’s drop the polite formalities, stop waiting for a distant cure, and work together toward one goal: that every patient in this room can live a little better tomorrow than they can today.
I want to sincerely thank Dr. Steffany Bennett and her entire lab for hosting me last week and taking me on a guided tour of all that they do. I will have more to say on their groundbreaking work in the months to come as my own personal lipidome results begin to trickle in. Stay tuned.