Celebrating the Stories of ADRC Research Participants

November 29, 2020

Science Updates, Care & Treatment , Team Spotlights, News

The ADRC is deeply grateful for the research participants who contribute to scientific discovery and the search for brain health solutions and treatments. Here, a dynamic bunch of community members generously share about their lives, passions, and unique reasons for participating in ADRC research studies.


Stuart Du Pen

“I want to do everything I can to help others who come along into this diagnosis."

Stuart Du Pen, a retired anesthesiologist, lives on the Olympic Peninsula with Anna, his wife of 30 years. After receiving a diagnosis of Alzheimer’s disease in 2017, the couple decided to join the ADRC study and look into opportunities to participate in other studies. As medical professionals, they are both familiar with end of life situations, when people often talk about leaving a legacy or donating organs. "Developing the science forward into the future for others is a kind of legacy that both of us really want for him," says Anna Du Pen, who works as an oncology nurse.

For Du Pen, participation in research goes along with lifelong interest in helping others through medicine. “I want to do everything I can to help others who come along into this diagnosis," he says. "I think the least we can do is work together—the researchers and the people living with the disease—to find the answer." It's also about surviving challenges, which, he says, is in his blood. Du Pen is the grandson of a man who survived the sinking of the Titanic, the only one of his group of 5 seamen to live. He went on to serve in World War II as a Captain in the US Navy.

Getting to the ADRC at Harborview takes commitment for the Du Pen couple, who travel two and a half hours each way. Anna says that the ADRC staff make their participation possible, especially research coordinator Yeung Tutterrow. “She understands that it is going to be a long day for us. She organizes our day so that we can go to the ADRC research visit and a memory clinic appointment, all on the same day. She did all the footwork, so I didn’t have to make those phone calls. It shows she understands that we need help.”

Adapting to new challenges, Du Pen keeps his mind active with games like Quarkle, doing the laundry and housework, and caring for a new puppy. He maintains a vegetable patch in a raised garden bed and enjoys watching birds. The couple feels lucky to live close to family, including nine grandchildren. If you ask whether the diagnosis of Alzheimer's disease changed his marriage in any way, Du Pen will tell you: "We're probably closer now than we've ever been in the past. And we were close before." •


Vivian Lee

“I hope for earlier diagnosis, and I hope that primary care physicians will become more astute at looking for symptoms and referring families to proper care.”

Vivian Lee was the first African American student admitted to the 4-year Bachelor of Nursing program at the UW in 1955, as well as the first African American registered nurse hired at the Seattle VA hospital. She went on to be a trail blazer in nurse practitioner training and public health for low-income communities of color. As a leader in the U.S. Public Health Service for 20 years, she implemented women’s health research projects and clinics in the Pacific Northwest.

Lee, 82, has been volunteering in ADRC research for over 20 years. “I wanted to volunteer, even before my mother developed Alzheimer’s symptoms at age 89,” says Lee. “I just felt the need for more women of color, especially African American women, to be involved in medical research.” She suggests that the ADRC could increase the diversity of the research cohort by setting up study sites in central or southern areas of Seattle, such as Columbia City and Beacon Hill.

Lee takes after her mother, Alvarita Little. Alvarita grew up in a in southeastern Texas farming community, receiving education in a school for African American children that did not provide access to high school. She would later pursue social work and become a community service leader in Seattle. She gained support from the city to fund and establish three girl’s clubs, including the Alvarita Little Center 1969, now home to the YWCA GirlsFirst Program.

As her mother aged, Lee and her husband moved next door to support her. So, Lee noticed when Alvarita forgot how to make her famous Texas-style potato salad and faltered in managing her budget. Yet, clever, resilient, and resourceful, she was able to score normally on cognitive tests, escaping a diagnosis of Alzheimer's again and again. It would be a long time until a doctor finally agreed with Lee that Alvarita needed dementia care.

It is her mother’s long-delayed opportunities to access needed resources that shape Lee’s vision for Alzheimer’s research: “I hope for earlier diagnosis, and I hope that primary care physicians will become more astute at looking for symptoms and referring families to proper care.” Lee says she hopes to follow in her mother’s footsteps in one more way: “I hope I will be a super-ager too.” •


Carolyn Chapel

“I am optimistic that there will be discoveries for future generations,” she said. “So, if I can help the researchers in some little way, I will.”

Carolyn Chapel's journey to ADRC research participation is a family story. Both her mother and her mother’s sister had an atypical form of Alzheimer’s. They experienced difficulties getting a diagnosis, partly because they retained their verbal abilities. After her mother died of pancreatic cancer, Chapel fulfilled a wish and gave the UW the most precious gift there could be: her mother’s brain.

As a retired educator and President of the Substitute Teacher's Organization in the Edmonds School District, she is proud of all the procedures she helped institute upon returning to the workplace after raising two children. But she is also proud of her mother.

Chapel remembers the moment when the research team showed her the report on her mother’s donated brain. “Seeing her brain image made me proud of her,” says Chapel. “I said out loud when I read it: ‘Mother, you did so well with what you had.’ It was very moving to me because I hadn’t realized how well she had done with this great amount of damage.”

Attuned to her family history of Alzheimer’s disease, Chapel decided to join the ADRC study. “I am optimistic that there will be discoveries for future generations,” she said. “So, if I can help the researchers in some little way, I will.” Chapel has had good experiences with the ADRC, remaining committed even as her own symptoms of Alzheimer's affect her. “The research study team has always treated me like I was special person and seemed to enjoy having me as they put me through various tests and exercises.” 

A correct diagnosis from the UW MBWC clinic gave her the information needed to make important life changes. She stopped driving, moved with her husband Roy into an assisted living facility, and accessed community resources. 

She points to MBWC neuropsychologist Kristoffer Rhoads, PhD, who gave a talk about sleep and brain health. This motivated her to get tested for sleep apnea, which led her to use an apnea machine every night. “I’m still plugging along with it, and I don’t need to take naps as much as I had to in the past,” she says. “All in all, I’m sleeping better at night.” •


Dixie Wilson

“I have an overreaching need to do whatever I can to eradicate the disease, and I am in the position to contribute and speak up."

Participating in ADRC research is just one of the many gifts of time, effort, and funds that Dixie Wilson has given to the UW, her alma mater. Upon returning to the Seattle area over two decades ago after a career in sales and marketing, Wilson began to volunteer in community service roles at UW Medicine, Seattle Children’s, and other organizations. Her support for Alzheimer’s disease started in 2001, when she joined the UW Friends of Alzheimer’s Research, a group dedicated to supporting the ADRC. She soon stepped into a leadership role as a board member, chaired the UW Friends of Alzheimer’s Research Petite Wine Auction. From there, she and her husband established the Steven G. and Dixie Y. Wilson Endowment for the ADRC, a fund that supports research to better detect early signs of Alzheimer's.

Wilson’s specific interest in Alzheimer’s disease comes from her family’s experience. Her father was one of five siblings who developed the condition. At a fundraising function, the Wilson's met Thomas Bird, MD, a leader at the ADRC. “When I told him a little bit about my family history, he asked me if I'd ever be interested in participating in research. I took his card, and when my dad passed away, I reached out to Dr. Bird. That’s how I got started.”

Beyond concerns about her family history, Wilson’s passion is larger than herself. “I also have an overreaching need to do whatever I can to eradicate the disease, and I am in the position to contribute and speak up. Back when my family was dealing with Alzheimer’s, no one was talking about it. Alzheimer’s was not something that was openly discussed. The stigma around it really bothered me, and I wanted to do what I could to try to put a voice to the common experience.” 

Wilson continues to provide insights and support to the UW Medicine Strategic Initiatives Committee and the UW Medicine Scholarship and Student Support Committee. Alzheimer’s takes center stage in her advocacy, because she knows the investment will pay off. “I do believe that in short order, we are going to have drugs in the pipeline that might be able to ward off the disease for some of us.” •