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Volunteers enlist in the fight against Alzheimer's Disease
Joint program between USC and Rancho Los Amigos relies on volunteers in effort to defeat Alzheimer's Disease.
WRITTEN BY :   Greg Waskul, Contributor

DOWNEY – Chris Watanabe is on the cutting edge of brain research. He’s not a physician or a Ph.D., but for nearly 20 years, he has been an integral part of a team at Rancho Los Amigos National Rehabilitation Center and Keck Medicine of USC that is exploring medicine’s final frontier to help defeat Alzheimer’s Disease.

Chris started volunteering for the Aging Brain Project at the USC-Rancho California Alzheimer’s Disease Center CADC) on the Rancho campus in 1995. Also called the Geriatric Neurobehavior Center, the facility which is a part of USC’s Memory and Aging Center has 78 dedicated volunteers like Chris who get nothing for their efforts other than a heartfelt “thank you” and the knowledge that they are helping create a better future.

Chris and his fellow participants take a comprehensive annual test that helps measure their brain cognition and have an MRI of their brains every two years. Some are also receiving new amyloid PET scans to check for the accumulation of amyloid plaques that are associated with aging and Alzheimer disease. They gather bi-annually at a conference, such as the one held last Saturday at Rancho, to hear the results of the ongoing research they are participating in.

“It makes me feel good that we can bring them back together so that they can see the data they are creating and how they are pointing the way forward,” said Dr. Helena Chui, who is the Principal Investigator of the Aging Brain Project, the Chair of Neurology at USC, and one of the world’s most respected neurologists.

Dr. Chui said the participants join the program because they understand the importance and the tragedy of losing memory and our mental acuity.

“They’ve stepped forward, because they are thinking about their children and their grandchildren,” she said. “They’re generous, they’re faithful, and they know the importance of this research. We couldn’t do it without them.”

Chris says he’s fascinated by what he’s found out about himself and what researchers have learned about Alzheimer’s Disease because of this program and others like it throughout the nation.

“I’ve discovered how I’m losing parts of my brain, cognitive and otherwise,” he said. “I used to play sports such as football and softball and participated in track. My advice is to keep busy mentally and physically and keep up with the newspapers. “Today I do yoga, tai chi and other things to help keep my body and my mind young,” Chris said. “I’m also active in the community and my wife and I travel all over the world with our daughters. But I wouldn’t be where I am today without the wonderful people who run this program.”

Dr. Chui, Dr. Freddi Segal-Gidan (director of the CADC) and Kathy Martelli, MA (research coordinator) spearhead the research team.

“They treat us very well,” said Tom Booth, who has volunteered for five years. “Everyone is very friendly. It’s always enjoyable to come over.
“This morning has been a super event,” Tom said. “In the presentations I’ve gotten a ton of information about brain degeneration and health and it’s given me a number of things I can do to stay healthy. ”

Tom had two personal examples of the ravages of Alzheimer’s disease that spurred him to volunteer. “I had a friend who died of Alzheimer’s at age 53. My wife’s stepfather had passed away a couple years ago from Alzheimer’s.

“By volunteering for this Alzheimer’s research, I have a chance to provide baseline information to the overall effort to defeat it,” he said. “I feel I’m doing the right thing to add to an important pool of scientific data that is helping the general welfare of our society and especially helping our kids.”

The National Institutes of Health’s National Institute on Aging (NIA) reports that this is an exciting time for Alzheimer’s disease clinical research. It states that “Thanks to advances in our understanding of this disease and powerful new tools for ‘seeing’ and diagnosing it in people, scientists are making great strides in identifying potential new interventions to help diagnose, slow, treat, and someday prevent the disease entirely.”

Researchers report that more has been learned about the brain and Alzheimer’s disease in the last two decades than in the entire history of humankind.

Dr. Chui said that the research done at Rancho and USC has helped move the understanding of Alzheimer’s disease forward. Some of the strongest risk factors for Alzheimer disease are genetic. For example one copy of epsilon 4 variant of the apolipoprotein E gene doubles the risk and two copies increases the risk 10-fold.

There are other potential risk factors for Alzheimer, both genetic and lifestyle related that are also under study. she said. “In the Aging Brain project, we’re trying to find out if vascular risk factors cause brain damage only by reducing blood flow (namely stroke) or also by adding to Alzheimer’s-related amyloid,” Dr. Chui said. We have preliminary evidence that high LDL-cholesterol is associated with greater accumulation of amyloid, while high HDL-cholesterol may be protective and associated with less amyloid. These findings were recently published in JAMA Neurology (Reed BR, et al., 2014). Dr. Chui emphasized that “levels of cholesterol can be changed by diet, exercise, and medications.”

The participants in the Aging Brain study were selected to represent a spectrum of low to high vascular risk factors. “We are now recruiting participants over the age of 70 years who have early signs of diabetes mellitus. In the future, we will be measuring levels of amyloid in the cerebrospinal fluid. We believe the quality of the data we’re getting from our participants will continue to help us ask new questions and discover the answers to the riddles of the disease.”

But although various Alzheimer’s research programs have received significant federal and state funding over the past two decades, that funding is miniscule compared to what is being spent on research on heart disease and cancer.

A report in the New England Journal of Medicine noted that the annual direct cost for Alzheimer’s disease in 2010 was $109 billion for an estimated 3.8 million people in the US who have the illness. This is a staggering number, about as high as the costs for cardiovascular disease, and more than 20% of the Medicare budget. Other estimates are even higher.

Dr. Segal-Gidan said these numbers show that it is vital to direct more resources to Alzheimer’s disease research. “We put a man on the moon in 10 years by going all out and accomplishing our goal no matter what it took,” she said. “If we fund enough Alzheimer’s disease research we can beat it. If we don’t, it will bankrupt us.”

These are strong words from a passionate clinician who works with the effects of Alzheimer’s disease on quality of life every day. But USC-Rancho program volunteers agree with Dr. Gidan that every thing that can be done should be done. And that’s why they are doing what they can, often because of experiencing first-hand the toll Alzheimer’s disease has taken on a loved one or close friend.

Shirley Lawrence, for example, said she began volunteering because her dad died from complications from Alzheimer’s and she wanted to help. “It makes me feel good, it’s a fun thing to come in and be challenged by the tests,” she said. “I’m hoping it helps down the line. I would like to see that this study does good things for people not just today, but in the future.

“I believe it’s very important to help,” she said. “It doesn’t cost you anything but a little bit of your time. It’s not painful, and the people I work with on the program are just so friendly and so appreciative. I can’t imagine a better way to make a difference. ”

Bob Falcon is 85 years old and retired, but he said, “I still have 15 balls in the air at all times. My mother had dementia, a guy whose race car I drove had Alzheimer’s, and a good friend of mine got dementia and stopped talking.

“I figured it was time for me to do something about it,” Bob said. “I think that maybe by doing this I will be able to help somebody. If you have a chance to get involved you should do it.

“Whenever I come home from being involved in this program I feel good. Because you know that somehow that data is going to help someone down the line,” he said. “I am amazed at what they have discovered.”

“The Alzheimer’s research program, the people and the doctors are all fantastic because they are trained to find out what’s happening to our brains and I know they will discover how we can cure Alzheimer’s,” Chris said. “So far they have found many things that are pointing the way to the answers, which is why this research is so important.”

“Sometimes we get the credit and the fame, but our volunteers are the bedrock,” Dr. Chui said. “They are really the most generous of humanitarians, says Kathy Martelli, research coordinator, because they are doing this for the greater good. We cannot and we do not forget them, because we stand on their shoulders in our quest to end Alzheimer’s disease.”

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Published: March 6, 2014 – Volume 12 – Issue 47



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