The MJFF and ESPN Founder Bill Rasmussen Target Trial Participation

In his new role as Michael J. Fox Foundation (MJFF) ambassador, sports channel ESPN founder Bill Rasmussen will focus on involving newly diagnosed Parkinson’s patients in clinical trials.

Diagnosed with Parkinson’s in 2014 at age 81, Rasmussen also will sit on the nonprofit organization’s 35-member Patient Council, which guides and counsels the MJFF on programming strategies.

Rasmussen’s overarching goal in this collaboration is to help speed a Parkinson’s cure. It’s a challenge he takes very seriously and he intends to bring the same determination and tenacity to this effort as he did when he conceived the creation of ESPN, the world’s first 24-hour sports television network that ushered in the era of round-the-clock broadcast coverage.

“Whether Parkinson’s related or not, the obstacles in my life won’t stop — and I won’t let them stop me,” Rasmussen said in a press release. “I make workarounds to address the disease and I accept it for  what it is. I still enjoy meeting new people. And I continue to be grateful that I can share my story. I hope my life story can help more people — even just one more person.”

With his signature upbeat attitude and commitment to staying active, Rasmussen hopes that by telling his story of Parkinson’s diagnosis and community engagement, he can encourage patients and families to help advance Parkinson’s study through clinical trial participation. He particularly hopes to involve the very newly diagnosed — those not yet on a Parkinson’s therapy — since they can help scientists track disease progression. He hopes to lead an effort to find, educate, encourage, and recruit new patients.

Clinical trials play a crucial role in the development of new and better therapies by evaluating the safety and effectiveness of candidate treatments. But trials need participants in order to move forward. Across all research, 85% of trials encounter delays and 30% never get underway, all because of volunteer shortages. Consequently, patients wait longer for new treatments.

“The first few months and years following a Parkinson’s diagnosis can be overwhelming,” said Rachel Dolhun, MD, the organization’s vice president of communications. “Few people think about participating in clinical trials during this time. But people in this fleeting window are in a unique position to contribute to research and help scientists capture the full continuum of Parkinson’s. We are thrilled to have Bill as an ally in sharing this story and helping increase the flow of critically needed newly diagnosed individuals into Parkinson’s research,” she said.

Rasmussen also is featured in the foundation’s resource guide for new patients, which includes stories on topics such as second opinions, the effect of stress, managing emotions, and early-onset Parkinson’s disease. In Rasmussen’s story, he talks about finally learning what his symptoms meant.

“My diagnosis was a relief,” he wrote. “Ultimately, I thought it was better to know my disease, to give it a name and to meet the challenge head on.”

Rasmussen was a guest panelist in a May 21 Foundation webinar on newly diagnosed patients. (Register here to listen on demand.) Rasmussen also will participate in the organization’s podcasts.

Rasmussen’s collaboration with the foundation is sponsored by ESPN.