Jonathan Sari, MS Clinical Trial Participant

A Race Against Time

For many clinical research participants, motivations vary—relief from pain, contributing to science, or helping future generations. For Jonathan Sari, however, the reason is more urgent: clinical research represents his only hope.

Jonathan, a video game developer, first realized something was wrong in 2003 at age 33, after his legs unexpectedly gave out during a short hike near his home in Walnut Creek, California. It took over a year of medical tests to identify the cause: multiple sclerosis (MS). Unlike the more common relapsing-remitting form, Jonathan’s disease was the rare and more aggressive primary-progressive MS. Over the years, his condition steadily deteriorated despite available treatments, which he found ineffective and riddled with problematic side effects.

Driven by the lack of effective therapies for progressive MS, Jonathan turned to clinical research, participating in a 10-year genetic study and two trials investigating potential treatments. One study examined fingolimod, a drug typically used for relapsing-remitting MS, but Jonathan ultimately withdrew due to worsening symptoms. In another trial, he received a low-dose antibody infusion aimed at re-growing myelin, the protective layer around nerves damaged by MS. Though the treatment was experimental and early-stage, Jonathan embraced the opportunity with optimism.

Clinical Research: A Lifeline and a Challenge

Today, Jonathan lives in Seattle, relying on a wheelchair, ventilator, and round-the-clock care. Despite these challenges, he remains committed to finding clinical trials that may slow the relentless progression of his disease. Unfortunately, trials for progressive MS remain scarce due to the complexity of studying its unpredictable course and the large patient populations required to measure efficacy.

For Jonathan, this scarcity underscores the urgent need to accelerate and streamline the clinical research process. “I just wish we could simplify and streamline the process for getting these trials done. I only have so much time left,” he says. “For me, it’s a race against the disease.”

While his journey highlights the harsh realities of progressive MS, Jonathan’s unwavering determination exemplifies the critical role clinical research plays—not just in advancing medicine, but in providing hope for those battling untreatable conditions.