Checkup

Participation In Study
Helps Researchers Find Answers

Four Godwin family siblings, who all developed Alzheimer's disease, with their mother in the early 1980s. From left: Lois Godwin Harris, Warren B. Godwin, Rachel Godwin (mother), Norma Godwin Bishop and Russell J. Godwin.

Researchers at Mayo Clinic in Jacksonville have been recruiting participants for a study that's looking to pinpoint genes that increase the chance of people developing Alzheimer's disease later in life. Previous research has shown that late-onset Alzheimer's disease — a form of the disease that strikes people 65 and older — runs in families. So finding families with two or more members who have been diagnosed with Alzheimer's in their 60s and beyond is extremely helpful in learning more about who will get it and why.

The Godwin family from Jacksonville became involved in the study in a unique way because they donated tissue samples, and the information they have provided has been invaluable. But families who want to enroll in the study need only to give blood samples (see box).

The oldest of six siblings, Russell Godwin first started having trouble with his memory in 1995. His wife Helen was the first to notice the change when she discovered that the financial records and check-keeping that her husband had so diligently handled for years were terribly disorganized.

Right around that time, his sister Norma was in an assisted living facility suffering from with what was later diagnosed as Alzheimer's. Fearful that he was going down that same path, Godwin and his wife made an appointment with Mayo Clinic's Memory Disorder Clinic. Sadly he, too, was diagnosed with Alzheimer's disease. He died in November 2001 at age 76. As Helen and her family held vigil right before his death, she brought up the idea of donating his brain to science.

"All of the grandkids were in the room," she says. "I told them that it would help researchers know more about this disease and that it could even help them later on. They understood and everybody agreed it was the right thing to do."

Just one year later, Russell's brother Warren, who was also in his mid-70s, died of Alzheimer's disease. His brain also was donated by the family. At his funeral, his sister Lois mentioned to family members that she felt like she was starting to have similar problems, too. In 2005, she succumbed to the disease, and her brain was donated.

"When a family acts together to make the data available and researchers work together to collect it, it has a multiplying effect," says Dr. Neill Graff-Radford, medical director of the Memory Disorder Clinic at Mayo Clinic. "This information has the potential to tell us a lot of things. What these families are doing is not only for the greater good, but it might help their own families in the future."

Mayo Clinic is one of seven national institutions participating in the multiyear study, which is funded by the National Institutes of Health (NIH). The goal is to create a large bank of genetic material and data from these families so researchers can identify the genes that cause the disease, examine the underlying disease process, and identify new drug therapies. The study is a third of the way to its goal, and researchers have until 2011 to recruit families willing to participate.

For those who do, Helen Godwin says they can rest assured knowing that the information they offer may be the key to finding important answers that might one day prevent Alzheimer's disease.

"I would encourage others to participate," she says. "It makes something good come out of this horrible disease."

How to Donate

To be eligible, families must have at least three members who can donate blood, including two siblings who developed Alzheimer's disease after age 60, another family member over age 50 who may have memory loss or a family member over age 60 who does not have memory loss.

Participation involves a neurological exam, donating a blood sample and providing medical records, demographic and family histories. Unaffected family members may be asked to participate. There is no cost involved and all information gathered is treated confidentially. Coordinators will make alternative arrangements for participation if eligible volunteers do not live near Mayo Clinic. For more information, call Jennifer Adamson at (904) 953-7687.