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My Research Journey: How an RBD Diagnosis, Not Parkinson’s, Led to Joining a Landmark Study

Allen in Venice

Despite its name, our Parkinson’s Progression Markers Initiative (PPMI) is not only for those with Parkinson’s. In fact, that’s the case for Allen Dance, 60, of Richmond, Virginia, who joined The Michael J. Fox Foundation’s (MJFF) landmark study after being diagnosed with REM sleep behavior disorder (RBD). 

RBD is a condition that causes people to act out their dreams (in Allen’s case — gesturing, speaking and laughing while asleep). “My partner and I occasionally have to sleep apart because I may strike her by accident while dreaming,” says Allen.  

RBD can be burdensome for the person living with it, as well as their bed partner. "I'm a naturally positive person, but it does sadden me when I wake up in the morning and find that my partner had to go to another bedroom because my dreams woke her up during the night."    

RBD is also a risk factor for Parkinson’s disease (PD). As a former athlete, Allen was always hyperaware and particularly proud of what he could do with his body. The idea that he may one day develop Parkinson’s stunned him. Although RBD is considered a possible early indicator of Parkinson’s, it doesn’t necessarily mean someone will develop the disease. Still, his partner, Kathleen, urged him to join PPMI. As someone who was already familiar with our Foundation, he readily agreed. Now a retired sales manager, Allen’s previous boss would bike 100 miles in the Boston area to raise money for MJFF. He would always donate, unknowingly benefiting his future self in the process. 

“I feel the need to contribute and help with the process if I can,” Allen says about participating in the clinical study. “That's how you're going to understand what the signs and indicators are, by tracking people.” His participation is imperative to our end goal of stopping Parkinson’s. Understanding the connection between RBD and PD goes a long way in terms of a cure. 

Additionally, Allen is a staunch reminder that anyone could be at risk for Parkinson’s — no matter their race, age or background. His participation in research as a Black man is one way to help scientists understand who is at risk for PD and how to prevent it. “If everyone in a study is White, then you only know the outcomes for a White population. But are those same outcomes true for people of color? You don't know unless you have a large, diverse sample size,” says Allen.  

Allen is crucial to our initiative, and you can be as well. “To better diagnose Parkinson’s, and ultimately find a cure, you need people to participate in studies,” Allen explains. “I felt a responsibility to step up and be part of it.”  

Hear more from Allen in a podcast

PPMI is enrolling volunteers with RBD. If you have RBD and don’t have Parkinson’s, call 866-525-PPMI or email to get started today.  

  • Allen biking
  • Allen at the beach
  • Allen with his bike
  • Allen Dance
  • Allen at the beach
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