“We have to do something,” says Linda Keilman about why she and her husband Joe are committed to participating in BioFIND—a clinical study geared toward discovering new biomarkers of Parkinson’s disease (PD).
When Linda, 60, was diagnosed with Parkinson’s in July 2011 after an incorrect diagnosis of tendonitis, she visited The Michael J. Fox Foundation (MJFF) Web site to educate herself about PD. Linda read about clinical research and spoke to her doctor about how she could participate. Joe learned that people without Parkinson’s were needed and said he’d sign up for studies, too.
“It’s about taking a negative experience and making it into a positive one, especially if it can help your immediate family and others in the future,” Joe says of his decision to participate in clinical research.
Despite attending the same high school, Linda and Joe didn’t meet until Linda’s 30th class reunion where Joe, a part-time musician, played his way into her heart. They celebrated their 10th anniversary earlier this year.
Within an hour’s drive of their home in Schererville, Indiana, is the University of Chicago, one of five clinical sites carrying out the MJFF-sponsored BioFIND study. (The other sites are Rush University in Chicago, University of Minnesota in Minneapolis, and Weill Medical College and Columbia University in New York.) BioFIND is enrolling PD patients and control volunteers into the study, which requires two visits over two weeks.
The data and biological samples collected from study participants will enable the development of a database and biorepository, which are available to the scientific community in real time to conduct research on new ideas for PD biomarkers. Identifying biomarkers of disease will help physicians better diagnosis and track PD progression and will help scientists speed the drug development process.(Another major MJFF-sponsored biomarkers study, the Parkinson’s Progression Markers Initiative, is also under way and currently recruiting participants over 60 without Parkinson’s disease.)
Joe will complete his participation in BioFIND next month. Linda is not eligible to participate in the study until next year, when she will have been on medication for three years, but is committed to enrolling when she’s accepted. She has volunteered for other clinical studies and is registered on Fox Trial Finder to be matched to studies that need people with her background.
Linda is doing even more to support Parkinson’s research. She is involved with the Northwestern Indiana Parkinson’s Group, which held a fashion show fundraiser through Team Fox. Her loved ones are getting in on the action, too—Linda’s daughter Jillian completed a 10K North Face Endurance Challenge for Team Fox and her daughter Robyn records her runs, walks and bike rides with the Charity Miles app to raise money for Parkinson’s research.
“The ultimate goal is to find a cure,” says Joe. “Whatever it takes.”