By Joan Elovitz Kazan
Illustration by Daniel Fishel
In 2011, after being diagnosed with multiple system atrophy – a rare neurodegenerative disorder that affects the nervous system and movement – and suffering from Parkinson’s disease for years, Robbie Miller and her husband, Darrell, reached the decision to donate her brain to science after her death. “We decided, as a family, 100 percent that it was the right thing to do,” he says. Robbie’s doctor, Dr. Paul Nausieda, told them about his research at the Parkinson Research Institute (PRI) in Milwaukee and about the institute’s brain-donation program. “Dr. Nausieda talked to us for almost an hour about the donation program,” Miller says. “He was very honest and very compassionate. He talked to us about the importance of this research.” Robbie died in 2012, and her brain became one of the more than 80 brains that have been donated to the institute since 2004.
With as many as one million Americans suffering from Parkinson’s, the research being done at PRI is at the forefront for Parkinson’s and other movement disorders, says Maggie Wallendal, the institute’s associate director of research. “For Parkinson’s research and movement disorder tissue donation, I can pretty solidly say we’re the only one in the Midwest,” she says. “We don’t turn away any brain tissue.” The center contributes to the body of research attempting to find cures for movement disorders such as Parkinson’s disease.
In addition to accepting brain tissue from people that suffer from movement disorders, the center also accepts tissue from those without movement disorders, which is used in control studies, Wallendal says. “Anyone that doesn’t have a movement disorder, those tissues are used to compare and contrast.”
Up to 65 percent of the tissue donation registrants come through Dr. Nausieda, who helped develop the program. Wallendal and Dr. Thomas Fritsch, the director of research at PRI, also travel the Midwest giving presentations to a variety of Parkinson’s support groups in Wisconsin, Illinois, Indiana, Iowa and Michigan. “We get quite a few registrations through those presentations,” Wallendal says.
Dr. Kuei Tseng is an associate professor of cellular and molecular pharmacology at the Chicago Medical School at Rosalind Franklin University of Medicine and Science. He is one beneficiary of donated brain tissue. “All new findings need to be validated directly or indirectly through samples from patients,” he says. “A donation of a relative’s brain tissue is gold because it will enable neuroscientists to achieve the ‘translational’ aspect of research.” That translational aspect gives researchers the ability to apply findings from the research phase to real-world medical practices.
And the center tries to make it as easy as possible for people to make the decision to support this research with a donation of brain tissue. “People gravitate to our program because we are free to the donor and the family,” Wallendal says. “Many other programs charge for autopsy results. We are funded by private donations only. It’s a unique aspect of our program.”
As for the process itself, “the family is dealing with the death of a loved one,” Wallendal says. “And we know that person’s dying wish was to have their tissue donated to the program. We want to make it happen so that it’s easy for the family.”
Those assurances made an impact on Miller. Meredith Clark, a brain-donation specialist at PRI, is on call 24 hours a day, seven days a week to facilitate the process for families. “The process relieved and removed the anxiety and fear of it,” Miller says. “It was perfect. There was nothing heavy laden with emotions.” Miller was committed to fulfilling his wife’s wishes and to furthering the research of movement disorders. “If I had it to do over again,” he says, “I would do it again in a minute.”