At a CISCRP Patient Advisory Board meeting in January that focused on an incurable brain disease called Progressive Supranuclear Palsy (PSP), Dave Potter met Alex Klein, Vice President of scientific affairs at CurePSP. Potter, the facilitator of a PSP support group near his home in the Cleveland, Ohio, area, got Klein’s contact information in case he needed it for the future. He did, in a way he couldn’t have imagined at the time.
A few months later, Potter would seek out Klein after receiving a remarkable request from the family of Connie Shippitka. Connie did not have long to live from the effects of PSP, and the family wanted to donate her brain for research into the rare disease. They didn’t know how to go about making the donation, however, and turned to Potter for help.
“It was an honor and a privilege that they called me,” he said.
Recalling that he had met Klein at the CISCRP meeting, Potter reached out to him to explain the situation. Time was of the essence, as a viable donation can only be made within a day or two after death. But Klein worked with the family to ensure that all the necessary steps were taken, such as having signed medical release and consent forms and securing the services of a pathologist for the donation.
Although advanced planning is preferable, Klein said that many families, overwhelmed by the responsibilities of caring for a loved one, wait until the end stage of the disease before initiating the donation process. He also acknowledged that many people have difficulty facing a decision that serves as a stark reminder of the nature of a disease whose complications can lead to death. But he said patients and families appreciate the chance to help with drug development and provide insight about the disease that cannot be discovered any other way.
“They create their own legacy in science,” said Klein, noting that samples from a single brain can be studied by dozens of researchers.
Connie Shippitka died in May, and her brain was donated to the Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic in Jacksonville, FL. Her daughter, Melanie Shippitka McCoy, said that her mother wanted to donate her brain so that other people could be helped. And knowing her mother’s wish could be fulfilled provided solace for her and her father, John. Indeed, both of them went to the funeral home when the pathologist arrived to harvest the brain, so they could feel part of the process and pay tribute to Connie’s generosity.
“The fact that they can study the brain, if there’s anything to be gleaned to help someone, it means the world to my dad and me,” Melanie said. “She had no voice for so long, but in this way, she had a voice.”
Melanie recalled the strength and sacrifice of her father, who became a full-time caregiver for Connie soon after she was diagnosed with PSP, which affects brains cells that control functions like walking and speech. Through the struggles of managing the disease, her parents found practical advice and emotional connection by attending the support group led by Potter.
Potter had cared for his mother, Beverly Potter, who died in 2014 after being diagnosed with PSP a few years prior. He has seen people like himself who have more experience with the disease help those in its earlier stages. He said he had a special bond with Connie, who reminded him of his mother, and was grateful that he was able see her shortly before she died. And Potter also was grateful to play a role in her quest to prevent others from facing the debilitating effects of a disease that researchers can now study further thanks to her final gift.
Written by Lewis Rice, Senior Editor of Patient Communications