Why participate in research? “Understanding is the greatest thing.”

The goal of research — a primary mission of the Penn Memory Center— is to discover valuable new knowledge, knowledge that over time will improve patient care. But what motivates people to take that leap and offer their time — and their biomarkers — for something that may not offer any tangible, personal benefits to their own medical care? For two women who participate in research at the PMC, their motivations may, on the surface, be somewhat different, but the underlying principle that guides them is the same — benefitting others.

The desire to know … for my children

Terraine Smith takes a stand for research.
Terraine Smith takes a stand for research.

Not too many people volunteer that they like hospitals. After all, the first thing many people associate with hospitals is illness. But Terraine Smith has always loved hospitals. “I’ve always loved the smells of the hospital, and I’ve always want to work in a hospital. It just interests me. I never feared it.”

Perhaps this interest in hospitals is one reason why she became a research participant at the Penn Memory Center. But talk with her further and a deeper reason emerges.

“I need for my kids to know. Understanding is the greatest thing. You can make good decisions from understanding,” she says. “Research is important because it not only helps you, it helps others. It gives you insight for your family. I don’t understand why people are so afraid of knowing. I always feel as though as if you know, no matter how bad the situation is, you have one up on it and you can fight it and maybe win it.”

Ms. Smith is a participant in the Penn Memory Center’s NACC (pronounced “Nakk”) study. NACC refers to the National Alzheimer’s Coordinating Center, the major brain-aging research program sponsored by the National Institute on Aging (NIA).

The NACC study is the largest and most comprehensive research effort in the U.S. aimed at better understanding Alzheimer’s disease, mild cognitive impairment and healthy brain aging. Currently the Penn Memory Center has 393 participants enrolled in the study.

Data is gathered from cognitive testing, imaging studies, (like MRI or PET scans), and other biomarker measures (such as blood and cerebrospinal fluid).

In addition to NACC, Ms. Smith has participated in both interview and diagnostic/imaging studies at the Penn Memory Center. The ASL-PET diagnostic study, which is currently enrolling, includes a PET scan, MRI and lumbar puncture. “Needles never bother me, she says of the lumbar puncture procedure.

For science and for God

NACC study volunteer Joanne Bullock hopes she can help researchers find a way to help those with Alzheimer’s.
NACC study volunteer Joanne Bullock hopes she can help researchers find a way to help those with Alzheimer’s.

The lumbar puncture didn’t deter Joanne Bullock from participating in NACC either.

“Everything I do, I do through the will of God. This is my motivation,” says Ms. Bullock. So when she consented to have a lumbar puncture she prayed, and “the Lord told me it would be ok.” She was nervous about the procedure, “but something told me to just go on and do it. It was for science, and it’s not going to hurt you.”

Joanne Bullock is busy. She sings in choirs, volunteers in nursing homes and works with incarcerated young women, trying to help them to make “righteous decisions.”

But she’s not too busy for research.

“I do a lot of volunteering at this age,” the 65-year-old resident of West Philadelphia says. “Because I’m getting older, I want to do something for someone else.” And, as Ms. Bullock says, “research fits in with doing something for someone else.”

Ms. Bullock met Tigist Hailu, Penn Memory Center’s coordinator for diversity in research, at a health fair in Philadelphia. “She asked me if I’d be interested joining the NACC study and I told her yes.”

In her younger days, Ms. Bullock didn’t know about Alzheimer’s disease. She knew about senility, because in the nursing homes where she worked as a young woman, that was what it was called. “I thought that at a certain age you just get confused.”

But through her work with NACC, she says, “I’ve been given some understanding of Alzheimer’s and a chance to learn about people who have the disease.”

“I didn’t know so many people suffered with Alzheimer’s disease,” she says. Someday, she adds, maybe researchers can find a cure and “a way for people with Alzheimer’s to get through their lives.”

The beneficence of research volunteers like Terraine Smith and Joanne Bullock is what helps move science forward and researchers edge closer to discovering effective treatments for Alzheimer’s disease.