UCI MIND faculty and staff recognize and appreciate the invaluable contribution volunteer research participants and their families make to the field of brain aging research. They are the most critical members of our research team. Learn about just a few of the amazing volunteers who make our work possible.
Participant: Chris La Violette
Study Partner: Olive La Violette
Research Study: Down Syndrome Program
When Chris was born in 1963, life expectancy for a newborn with Down syndrome (DS) was a little over 12 months of age. Institutionalized care was the accepted norm and most physicians and scientists believed these children wouldn’t achieve many of the normal developmental milestones. With loving care from his family and his innate determination to succeed, Chris, like so many others with DS in his generation, demonstrates that much can be achieved. Chris developed the skills necessary to talk, read, write, win numerous medals in Special Olympics, create original artwork, and vote in every presidential election since Reagan-Mondale. While these achievements are remarkable, his mother Olive is most proud of the fact that Chris developed into a well-mannered, caring and compassionate person. She describes Chris as “one of the world’s beautiful people” and states “there is no question that my life has been infinitely blessed through him and that I am a much better person today because of him.”
Since 1990, Chris and his mother have volunteered for studies that Dr. Ira Lott and other UCI MIND researchers are conducting to elucidate the relationship between DS and Alzheimer’s disease. Currently Chris, with Olive serving as his research partner, is part of the Down Syndrome Program through which he receives annual assessments of his neurological and cognitive function. Olive understood that Chris had a high likelihood of developing Alzheimer’s disease but was forever hopeful that he would remain free of the disease. During one research visit, when Chris was 42 years old, she reported subtle changes in his functioning.
He began forgetting where he put things, misspelling his name and confusing his phone number with his ZIP code. He was less interested in his art work and music, had trouble following verbal direction, was walking more slowly and taking more time to complete his daily activities. Chris had transitioned into the early stages of Alzheimer’s disease. Within three to four years, his dementia progressed to the point that Olive could no longer manage his care at home and had to place him in a care facility; something she had avoided since his birth. Today his dementia has progressed to the point that he is completely dependent on others for assistance. Watching Chris change is particularly difficult for Olive. “Chris once had an incredible memory; his mind was full with a never-ending flow of facts, thoughts, ideas, statistics (his favorite word), trivia and fond life memories. Today that it is all gone. It breaks my heart to watch Chris slowly lose all that he fought so hard to achieve.”
Though these past years have been difficult, Olive is proud of the contributions Chris has made as a research participant, believing “parents of future children and adults with DS will have answers to some of the questions that were unknown to his father and me, especially those that relate to Alzheimer disease.” We are grateful to Chris and Olive for their past and continued participation in our clinic as well as research on DS, and particularly for sharing their story. For more information on the UCI Down Syndrome Program, please call 714.456.8443.
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