For Portland-area residents Kathy Grunwald and Marilyn Belanger, there's no question genetics plays a role in Parkinson's disease.
Grunwald, 60, of Tualatin, and Belanger, 67, of Gresham, are sisters and both have been diagnosed with the progressive neurological disorder. They also have a cousin who has the disease. But until Belanger was diagnosed two years ago, neither woman thought Parkinson's might run in their family.
"It never entered my mind that I would have it, too" Belanger said. "My brothers think that one of our uncles had it as well, but we never knew that."
Grunwald and Belanger are participating in a national study, through the Parkinson Center of Oregon at Oregon Health & Science University, that is recruiting 1,000 sibling pairs with Parkinson's disease whose DNA will undergo genetic linkage analysis. Known as Parkinson's Research: The Organized Genetics Initiative, or PROGENI, the National Institutes of Health-funded project is hunting genes that predispose an individual to develop Parkinson's disease.
Julie Carter, M.S., A.N.P., associate professor of neurology in the OHSU School of Medicine and associate director of the Parkinson Center of Oregon, is a principal investigator for PROGENI and a member of the Parkinson Study Group, a team of neurologists from throughout the United States, Canada and Puerto Rico that is helping lead the effort. The Parkinson Center of Oregon is one of PROGENI's top three recruiting and evaluating centers, among 64 centers nationwide.
Other collaborating institutions include the Indiana University School of Medicine, the University of Rochester in New York, the University of California, San Diego, and Cincinnati Children's Hospital Medical Center.
The genetic information retrieved by PROGENI, along with occupational, environmental and other risk factor data, is expected to improve pre-clinical detection of Parkinson's disease and foster the development of more effective therapies, organizers says.
Tatiana Foroud, Ph.D., professor of medical and molecular genetics at the Indiana University School of Medicine and a PROGENI leader, is the keynote speaker Sunday, Sept. 11, at "Options & Opportunities," the Parkinson Center of Oregon's 22nd annual symposium for patients, families and health care providers dealing with Parkinson's disease. The event is from 9 a.m. to 4 p.m. at the Holiday Inn Downtown Convention Center, 1441 N.E. 2nd Ave., Portland.
Foroud's presentation, "Genetics: Unlocking the Mysteries of Parkinson's Disease," will examine the PROGENI project and walk the audience through the history and exploration of a group of genes now known to be associated with Parkinson's disease.
"We have five different genes we'll be able to talk about, how they were found, how they're important, and we'll try to explain the common link among all of them," said Foroud, who noted that 25 percent of individuals with Parkinson's disease "will tell you they have another family member who has it. It's a smaller proportion that has a living sibling."
She noted that the Parkinson Center of Oregon has been a good source for PROGENI participants. "The Oregon site for us has been fantastic. It's been a very, very active center for our study. I'll tell symposium participants about the study and try to get them excited about participating."
Grunwald, who was diagnosed with Parkinson's ten years ago, said she hopes the DNA extracted from the blood she and other members of her family donated to the PROGENI study helps prevent other families from having to suffer through multiple, or any, Parkinson's diagnoses.
"My hope is that (scientists) find something that can give us a better quality of life," she said. "I know they can't stop it, but a better quality of life would be good. As long as there's always hope ..."Belanger agreed. "We're hoping that the information from my family helps find the cause or helps find some answers," she said, "because I think, probably within a couple years, they will have progressed quite a bit in understanding it."
For more information and to register for "Options & Opportunities," contact the Parkinson Center of Oregon at 503 494-9054.