"I help provide a link between families and science," says Ellen Steinbart, a research nurse at the Alzheimer's Disease Research Center (ADRC).
Steinbart works with Thomas Bird, MD, and Gerard Schellenberg, PhD, who lead the Genetics Core of the ADRC. This research team is looking for genetic changes to explain dementia in families.
When family members have questions about Alzheimer's disease and genetics, Steinbart is often the first point of contact. She takes information on their family history and draws a family tree. For families appropriate for the genetic research, she obtains blood samples and medical records.
Some of the families she's kept in touch with for 22 years, back to when she first started working at the Center.
Steinbart carefully opens one of the family trees she's created, eight-and-a-half-by-eleven-inch sheets of paper taped together and folded over and over to fit into a manila folder.
This family tree is one of many filed away in folders that are filled with information on hundreds of families with a wide range of ethnic ancestry taking part in research studies. The folders squeeze into nondescript metal file cabinets that stretch down the hall and around each cubicle corner.
Steinbart has tracked eight generations of this particular family. Squares designate males and circles represent females. Many of the shapes are filled in, darkened, indicating individuals diagnosed with Alzheimer's disease.
The family is one of a small group of families being studied who trace their ancestors to adjacent villages in the Volga River region in Russia.
Steinbart knows the history of these Germans well.
In the 1700s, Catherine the Great, a German, married the Russian tsar. When he died, she became the Empress of Russia. She was bothered by the Tatars moving into a stretch of land around the Volga River. So in the 1760s, Catherine the Great recruited German farmers to come and settle in the Volga River region of Russia. Catherine thought the farmers would help stabilize the region, Steinbart explains.
In the late 1800s and early 1900s, when the situation in Russia changed, some of these families began emigrating to the U.S.
It was a group of these descendants that helped lead to an exciting discovery back in 1995. A rare genetic mutation--the Presenilin 2 gene--was identified as the cause of Alzheimer's disease in that family line. (See Dimensions, Fall 1995 "ADRC researchers identify gene that causes familial Alzheimer's disease.")
Perhaps it's no coincidence that Steinbart's career has come full circle, from her initial interests in history and German as an undergraduate student at Macalester in St. Paul, Minn. Her sophomore year abroad was spent in Vienna, studying German and volunteering in a hospital in the city. After graduating, she moved to New York to get her nursing degree at Cornell University. Then she got her master's degree in nursing at the University of Washington School of Nursing, which brought her to Seattle. It was an ad in the newspaper that told her of the job at the ADRC.
Bird asked her to take family histories and the research team began to study the Volga-German families among the other groups involved in research studies at the ADRC.
"It felt like it (the job) was meant to be," said Steinbart.
When she's not working, Steinbart is weeding her small flower and vegetable garden or reading. She's been with the same book club for the past fifteen years, and sometimes they travel together.
Pictures of Steinbart's two grown daughters hang on a bulletin board. So, perhaps what Steinbart likes best about her job comes as no surprise.
I really enjoy working with the families," said Steinbart. "They've been very generous people to share with us what's going on in their families, to give us an opportunity to try and learn more about Alzheimer's and come up with answers."
The hope is to find the genes responsible for dementia, which in turn "gives researchers an opportunity to create some kind of treatment or prevention," says Steinbart.
Sometimes people just want information and don't want to participate in the studies. That's fine, too, she says. "We try to be a resource for families. Sometimes it's hard to find information on genetics and Alzheimer's disease. So we do a lot of sharing."
To find out more about research on Alzheimer's disease and genetics, call Ellen Steinbart at (206) 764-2112 or toll-free at 1-800-745-4511.