Three family members Ruth Thompson, middle, is pictured with daughter Darlene Williams and granddaughter Shanna Williams. Their family and extended family are taking part in the Familial Dilated Cardiomyopathy Research Project. Comet photos by Jennifer Archibald Ruth Thompson, her children, grandchildren, and great-grandchildren are participating in a medical research project because, as she says, "It's so important to our family."

Recently a team from the Miller School of Medicine, University of Miami, came to Wagoner Medical Center in Burlington to conduct screenings for the Familial Dilated Cardiomyopathy (FDC) Research Project. This is the project involving Ruth, her family, and extended family.

FDC is an inherited heart muscle disease. The weakened muscles result in an enlargement of the heart and a weakening of the heart's pumping action.

Ruth, a native of Burlington, said she lost her grandmother and her mother to the disease, and her brother is now battling FDC. Her mother died at age 44. Ruth's grandmother's sister also suffered with the disease, as well as some of Ruth's cousins.

Dr. Ray Hershberger Dr. Ray E. Hershberger founded the FDC Research Project in 1993 when he was associated with the Oregon Health & Science University (OHSU) in Portland. The purpose of the project is to identify and understand the genetic causes of cardiomyopathy and heart failure.

Dr. Hershberger said Ruth's family was the first family studied, stemming from an index patient in Oregon in 1992. Ruth said that was her cousin, and she died from the disease.

Dr. Hershberger, a cardiologist, is the principal investigator on the project. He moved from OHSU to the University of Miami medical school in 2007, so the project is now based there.

Ruth's family is one of 400 different families being studied in the project.

When Ruth's relatives in Oregon began to be screened for the study, Ruth wanted family members in Indiana to become a part of the project, too.

Ruth said she is a patient of Dr. Don Wagoner in Burlington. With Dr. Wagoner's blessing, the team first came to the Burlington facility in 1994. Ruth was instrumental in getting family members from Indiana to come and be screened.

The team from Miami sets a date for the free family screenings and uses the facility for the weekend. Linda Richards, LPN at the clinic, said one of the factors the team considered in coming to Wagoner Medical Center is that it has its own ultrasound machine.

"Not many family practices have that," she said.

Dr. Hershberger said the screenings include echocardiogram (ultrasound), electrocardiogram, taking medical history, a physical exam of the cardiovascular system, and drawing blood, preparatory to obtaining DNA.

Dr. Hershberger said this was the third time that the research team has come to Burlington to screen Ruth's own family and relatives from central Indiana. He said Oregon members of the family continue to be screened there.

After the initial screenings in Burlington in 1994, the research team came again in 2000. The most recent visit was about a month ago.

Dr. Wagoner said around 40 members of the family participated in the latest screenings.

Ruth said she enjoyed talking with her relatives, some of whom she met for the first time. At age 79, almost 80, Ruth believes she is the oldest of family members living in Indiana.

Dr. Hershberger said Ruth's family is one of the five largest families being studied in the FDC project. He said large families give an increased statistical chance of finding the gene cause.

"Of the 400 families being studied, we have found the gene cause in about 50 of those families," Dr. Hershberger said. "The genes we have found are previously discovered genes (known to cause cardiomyopathy), not 'new discoveries.'"

He said although they haven't found the gene cause in Ruth's family, they have been able to do extensive genetic testing, which has led to gene mapping and preliminary suggestions.

Dr. Hershberger added that when a gene cause is found, there can be ongoing surveillance to see who is at increased risk for the disease.

"We will not give up," he said.

This family and others will continue to be screened, roughly every 10 years, he said, until a gene cause is found.

Dr. Hershberger explained that the project will be ongoing as long as it is funded, and families continue to collaborate. Current funding comes from the National Institute of Health, he said.

Ruth said so far, she has not had FDC, nor has it appeared in any of her four children. She is hoping the same holds true for her eight grandchildren and five great-grandchildren. She has supported the research project because of its importance to all her family.

"This family has been very interested, enthusiastic, and collaborative," Dr. Hershberger said. "We appreciate it."