A Personal Journey From Diagnosis to Discovery in MS Research

How a PPD researcher and indication champion has learned to balance life with multiple sclerosis, both personally and professionally

In the summer of 2005, I got a phone call that changed my life forever.

I had experienced some unusual symptoms that had come on suddenly, partially losing my sense of taste and getting cloudy vision in one eye. Being a clinical researcher, I appealed to my colleagues in neuroscience for their thoughts on my symptoms. Their prevailing theory was that it could be a tumor, because the symptoms stemmed from different nerve centers.

Then came a flurry of tests, scans, consultations with specialists, and even an MRI. A few weeks later, I received a call from my primary care physician. I remember thinking that if the doctor calls you themselves, that’s never a good thing. I went into panic mode.

The news was startling. My doctor suspected that I had multiple sclerosis (MS) and immediately referred me to a neurologist. My first thought upon receiving the diagnosis was not about MRIs, clinical trials or even my own research into the disease — my wife was pregnant at the time, and I initially feared I wouldn’t get the chance to walk my daughter down the aisle.

I had an uncle who passed away from complications of MS. I had watched his steady decline — first some physical disabilities, then cognitive disabilities. In the end, he was completely dependent on everybody else for everything, to the point that his body just shut down. That was the image I had.

I remember thinking my life was over at age 32.

Little did I know that my diagnosis would be the beginning of an important new chapter in my life that has enabled me to fuel research into the disease — a journey that continues to this day. My story has helped shape my own MS research.

MS: A crash course

MS is a chronic neuroinflammatory disease that affects more than 1 million people in the U.S. and more than 2.8 million worldwide. Women are more likely than men to get MS, and symptoms generally begin to manifest between the ages of 20 and 40.

MS is an autoimmune disorder in which the immune system attacks otherwise healthy cells in the nervous system. Specifically, the immune system attacks nerve cell bodies and myelin (insulating layers around nerve fibers) in the central nervous system. If the disease progresses without treatment, the brain’s cerebral cortex shrinks in a process called cortical atrophy.

Sclerosis is a medical term for lesions on brain tissue resulting from attacks on the myelin. The symptoms of MS vary based on the intensity of the flare-ups and the size and location of the affected areas in the nervous system. It’s an unpredictable disease — some people have mild symptoms with little progression, while others lose functional and cognitive ability.

The current state of MS research

When my uncle was diagnosed with MS in the early ’80s, treatment options were non-existent, and the future was bleak for those with the diagnosis. Most people knew that they would end up with a wheelchair or walker in the best-case scenario, or, at worst, bedridden with little to no cognitive or physical function. While there currently is no cure, advancements in treatments have made it possible for people with MS to live long, healthy lives — many without significant disabilities.

However, MS manifests differently in every patient, so what works for one person may not work for another. Some patients don’t respond to treatment at all, and some have a more aggressive form of MS. There remains a vast unmet need for better and more efficacious treatment options, particularly for those people who have not found success with the current medications.

As of November 2024, more than 20 U.S. Food and Drug Administration (FDA)-approved disease-modifying therapies (DMTs) are available to manage MS. Most of these reduce relapse rates and slow disease progression. Bruton’s tyrosine kinase (BTK) inhibitors have demonstrated a 31% delay in MS progression during late-stage trials, offering hope for more precise treatment options. Innovations like a four-dimensional brain map developed by National Institutes of Health (NIH) researchers enhance early detection and treatment strategies, potentially leading to better patient outcomes.

Right now, there are multiple options for treatment. When I got my diagnosis, there were only four. I know all too well how grueling it can be to find the best treatment. Initially, I was prescribed an injectable treatment, which presented its own set of challenges. Not only did I have to self-inject daily, but some of the side effects were terrifying.

A couple of times a year, I’d get a very rare and terrifying side effect. I felt like I was having a heart attack. They told me about this in advance, but it’s still kind of scary when suddenly you can’t breathe and you’re getting tunnel vision. My heart started racing. My body went into shock, and for the next two hours, I was just shaking uncontrollably in the middle of the night.

I also had to endure the stress and claustrophobia of MRIs three to four times yearly. My first few years with the disease, while challenging, did give me insights to find renewed focus in my professional life. My own experiences with MS brought a unique perspective to my role at the PPD™ clinical research business of Thermo Fisher Scientific. I didn’t understand the patient perspective before my diagnosis. Today, I help advance MS research as an advocate and “indication champion.”

I have been fortunate. I have since switched my treatment to a pill, but only after tapping one of the neurologists on my team to help understand the risks.

Before I even started, I was able to consult our internal neurologists and ask about the treatment. I’d done my own research, but I wanted to put it into context. I asked them what they would do and what they would recommend for their patients. Their answers gave me a new level of insight and engagement, which was incredible, especially for something I considered taking. With that background knowledge, I felt confident in my decision, and I’ve now been on it for well over a decade.

MS research has found great success for many patients. Nonetheless, knowing that some patients are non-responsive to current medications is what motivates researchers to keep learning about MS. That is precisely what my team hopes to do.

Putting the patient perspective into MS research

Thermo Fisher Scientific’s PPD clinical research business applies deep expertise in neuroinflammatory diseases to advance the development of novel treatments for MS. Our team is at the forefront of evaluating innovative approaches, including CAR-T cell therapy — an emerging treatment that has already demonstrated success in oncology. This method reprograms a patient’s T-cells to target and eliminate the B-cells driving the MS autoimmune response. Through strategically designed clinical trials, we are assessing the safety, efficacy and long-term potential of this therapy to alter disease progression.

Beyond pioneering new treatments, our team conducts long-term studies on DMTs to ensure their sustained effectiveness and identify opportunities for improvement. With 24 DMTs currently available, we focus on optimizing trial design to streamline regulatory pathways, reduce patient burden and expand research into regions where MS diagnoses are increasing. We leverage deep therapeutic expertise, global trial capabilities and a patient-centric approach to drive the development of next-generation therapies that may one day halt or even reverse MS-related disability.

With more than 500 experts, including four full-time neurologists, our team has enabled clients to develop five top-selling MS drugs, and three of the four MS treatments approved in the past five years. For more than 25 years, we’ve been a leader in the MS space and have established relationships with top investigators around the world. However, our focus has always been on conducting clinical trials that center the patient’s needs, comfort and real-world challenges.

For me, this mission is deeply personal. It’s not just about the next breakthrough — it’s about ensuring that every patient diagnosed with MS today has a future with more options, more hope and a better chance at living life on their terms.

There’s a quote that I live by, and while the philosophy is simple, the consequences are profound: “It’s the patient that matters, and if you get that right, the rest of it will follow.”

This mantra isn’t just a talking point for us — it’s the foundation of our work.