By Barbara J. Arnold
In the fall of 2005, I received an email from the Wisconsin Comprehensive Memory Program soliciting volunteers to take part in the Wisconsin Registry for Alzheimer’s Prevention (WRAP). This was to be a long-term research study aimed at identifying people at risk for developing Alzheimer’s disease. The researchers hoped their research projects would lead to a better understanding of the disease and how to slow its growth or prevent its onset.
I was interested in participating as a volunteer because members of my family are doctors or science researchers, members of my extended family had dementia in their later years, and I had friends who had loved ones with Alzheimer’s disease. I had experience as a study volunteer in a Post-Polio Syndrome Study that ended because of funding cuts. I had enjoyed my participation in that study and learned a lot of helpful things. I especially have used the advice to listen to your body and stop to rest before you reach exhaustion, because you can recover much faster than if you push through to fatigue.
The WRAP study is being conducted by Professor Mark Sager, director of the Wisconsin Alzheimer’s Institute, and Assistant Professor Sterling Johnson, Wisconsin Comprehensive Memory Program, University of Wisconsin Medical School and the Department of Veterans Affairs Middleton Memorial Veterans Hospital. There were about 500 participants in the memory and cognitive testing. The questionnaires and laboratory testing included medical imaging using a variety of techniques. Lifestyle and health questions have been shared with my family, and I have had follow-up assessments every four years. Some times I have received a stipend for my clinic and hospital visits. I have seen new places in UW-Madison research centers, met very nice and interesting clinicians and technicians, and I even have a picture of my own brain.
Participation in WRAP has grown to more 1,500 and the study is now recognized around the world as one of the premier cutting-edge programs. There are two public updates a year held in several locations around the state. People attending have been able to get up-to-the-minute information on researchers’ findings and get answers to their many questions. Recommendations on diet and exercise have been emphasized to help stave off the onset of the disease and other forms of dementia. I have enjoyed attending public updates, meeting researchers and other study participants, and connecting with friends.
I will continue to be part of WRAP because I like playing a part in finding answers to this devastating disease and being able to share information on the latest outcomes with others.
The Wisconsin Alzheimer’s Disease Research Center is now in special need of participants in two areas. The first is healthy controls. That means if you are age 45‒65 and don’t have dementia in your family, you can participate in research at UW-Madison that helps the side of the family that is impacted. The other is the national Anti-Amyloid Treatment (A4 Study, for short), a new drug study for folks age 65‒85 who are at risk for developing dementia. For further information on how you can help today or in the future, contact Carol Hutchison at 265-0407 or email cshutch@medicine.wisc.edu.
