Featured Volunteers

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. Click the tabs below to learn about just a few of the amazing volunteers who make our work possible.

 

Participant: David Solomon
Study Partner: Mary Solomon
Research Study: Longitudinal Study

Mary-and-David-Solomon

In 1997, David made a decision to volunteer for the Longitudinal Study after having cared for his sister with Alzheimer’s disease for a decade. Over the past 15 years, Dave has contributed extensive neurological and neuropsychological information, collected through annual evaluations, to the national ADRC research database and has participated in several UCI-led studies investigating healthy aging and Alzheimer’s disease.

Dave’s wife, Mary, has served as a faithful study partner over the years, completing annual interviews and questionnaires about her husband’s everyday activities. Without hesitation, Dave also agreed to donate his brain for research upon death. He explains, “If using my brain would give them another clue to a medicine or whatever to stop this thing, that would make it all worthwhile.” Dave enrolled in the study out of concern about his own memory difficulties, “I knew I had to stay on top of it.” And his annual evaluations did just that, reassuring him that his cognitive abilities were normal for his age until 2006, when doctors caught the earliest significant cognitive difficulties that suggested a risk for developing Alzheimer’s disease or another dementia.

In 2009, Dave was diagnosed with Mild Cognitive Impairment (MCI), a condition in which a person’s memory and/or thinking abilities are not normal for their age but do not interfere with activities of daily living. Now, another of Dave’s sisters has Alzheimer’s disease and a third has MCI. Mary is convinced that her husband has done so well because, “He takes care of himself; he goes to the gym three days a week; he eats correctly; he stays engaged. All of that has helped him not to have a diagnosis of MCI until two years ago.”

Dave continues an active life, volunteering as a messenger at St. Joseph’s Hospital in Orange and for various activities at church. In addition to exercising regularly, Dave enjoys spending time with his granddaughters, having coffee twice weekly with “a bunch of the guys” from the gym, gardening, and taking in the theater with Mary. We are deeply grateful to Dave and Mary, and every person who volunteers to participate in research at UCI MIND. Our special thanks to Dave and Mary for sharing their story so openly out of a desire, in Mary’s words, “to give people more awareness of what Alzheimer’s disease is and get them to start treatment early.” For more information about becoming a Longitudinal Study volunteer, contact our research team at 949.824.3249 or research@mind.uci.edu.

Participants: Nancy Jenkins, Larry Jenkins
Research Studies: Longitudinal Study, Successful Aging Program

Nancy is an inspiration to others, including her husband Larry, as she participates in research while battling Alzheimer’s disease. As a volunteer for the Longitudinal Study, Nancy allows doctors to follow the progression of her disease annually and has agreed to donate her brain upon death. In the meantime, Nancy is participating in every study she can, including donating cerebral spinal fluid (CSF) for biomarker research and undergoing an 18-month course of infusions for a clinical trial of a promising new candidate Alzheimer’s disease treatment.

With Nancy’s encouragement, Larry also decided to get involved as a research volunteer for the Successful Aging Program. Even as Nancy’s memory and thinking abilities continue to decline, she remains clear that she’s going to say yes to any research study she’s eligible for because, in her words, “I don’t want anyone else to have to do it” – to live through Alzheimer’s disease. As faithful research volunteers, Nancy and Larry are courageously working with UCI MIND in the fight against Alzheimer’s disease to benefit future generations.

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.

Our desire is to do what we can to help find a cure for this disease.

Roger LisabethPhilanthropist & Study Partner

I think it’s very important for people to participate in Alzheimer's prevention clinical trials...I have {Alzheimer's} in my family and I’m hopeful that what I’m doing will help people in the future.

Marsha GroveResearch Participant

I began participating in research after my mother passed away with Alzheimer’s in 2000...I feel like I’m contributing. I want to do anything I can to help the research that’s being done.

Linda BenjaminResearch Participant

My family donated {my husband's} brain to research. At every level we were treated with respect and dignity, and we considered it a privilege to be a part of the research to find a cure for this horrible disease.

Dee MaltbyStudy Partner

If we can collectively contribute to future generations, who knows what can be achieved.

John BakerResearch Participant