“Participating in Studies Gives One a Sense of Power”

Editor’s Note: For more Foundation news, research updates and tips on living well with Parkinson’s, read the Spring/Summer 2017 edition of The Fox Focus, our biannual newsletter.

Sue Lifschiz of Santa Rosa, California was diagnosed with Parkinson’s disease (PD) in 2002 at age 65. While her uncle also had the disease, it wasn’t until one of her daughters began experiencing symptoms that Sue made the decision to undergo genetic testing.

“It seemed like an easy thing to do,” Sue said. “I had children and grandchildren, and I wanted to know if I had any genetic mutations I might be passing onto them.”

The test showed she carries the LRRK2 mutation, which is the greatest known genetic contributor to Parkinson’s disease. (Even so, it accounts for only one to two percent of all PD cases.)

Sue joined the Parkinson’s Progression Markers Initiative (PPMI), The Michael J. Fox Foundation’s landmark observational study to find a biomarker — an objective measure of the disease — for earlier diagnosis, better disease tracking and more efficient testing of new therapies. PPMI also aims to learn more about genetic risk factors for PD, specifically in people with mutations in the LRRK2, GBA and SNCA genes.

To better understand biologic changes over time, qualifying volunteers participate for several years, undergoing regular clinical assessments, imaging tests and biospecimen collection. The tests are typically conducted every few months. “It’s not a big burden,” Sue says.

The study is currently recruiting participants with and without PD who carry the LRRK2 or GBA mutation. People of Ashkenazi Jewish descent (like Sue) who have a first-degree relative with Parkinson’s are more likely to carry these mutations. Since not all those who carry a mutation develop symptoms, Sue plans on talking to her synagogue about how they can contribute. “I realized how difficult it is to find people who have the mutation but who don’t have the disease, and that’s the group that [researchers] really need,” she said.

Sue also is part of Fox Trial Finder, the Foundation’s online clinical trial matching tool, and has participated in other studies aimed at understanding the genetics of Parkinson’s. “I think one of the real problems of PD is feeling powerless and like there’s nothing you can do,” she said. “Finding out as much about the disease and participating in these studies really gives one a sense of power over what’s happening to you.”

Visit michaeljfox.org/clinicaltrials to learn more about the importance of clinical trial participation and how to get involved.

Read more on research updates in the Spring/Summer 2017 edition of The Fox Focus, the Foundation’s biannual newsletter.

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Jen A. Miller is a freelance journalist and author of the memoir Running: A Love Story.

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