Sharon Rybicki of Sarasota, FL, was diagnosed with Parkinson’s in 1998. Only 43 years old at the time, she was devastated by the news. But six months later, Michael J. Fox shared his diagnosis with the world. Sharon says, “I couldn’t feel sorry for myself any longer. Here was someone diagnosed even younger, and look what he was doing to bring attention to this disease.”
Being a user and longtime fan of Google and Gmail, Sharon read about their efforts to build a database of 10,000 Parkinson’s patients through 23andMe. She willingly participated and monitored the information, which was updated regularly. When 23andMe offered Parkinson’s members an opportunity to add an additional family member, Sharon’s son, now in his twenties, submitted a sample. He was able to get information on his disease risks as well as his paternal ancestry.
Ten years later, her brother was diagnosed with a different progressive neurodegenerative disorder: Multiple system atrophy (MSA). Wondering what was happening in her family, Sharon encouraged her brother to participate. Like many, she was surprised by the results.
She carried four genetic mutations that put her at a higher risk for PD. Her brother also carried four but they each had one the other didn’t. And Sharon’s son had two additional Parkinson’s-related genetic mutations that she didn’t. But according to family oral history, no one had any recollection of a relative with PD.
Although now there are more questions than answers, she doesn’t regret her decision to get tested. “Even if you have the markers for something,” she says, “it doesn’t mean that you’ll get it. And there are things you can do to improve the odds that you won’t get it.” She thinks it would be interesting to know of her many siblings and cousins who may have inherited some of the same mutations and never got the disease. She also enjoyed learning about her ancestry, and the opportunity to find relatives online.
Since then, Sharon has signed up for Fox Trial Finder, as she’s eager to do whatever she can advance someone else’s research. She’s also inspired others to participate. After her cousin was diagnosed with Parkinson’s, she became a part of the 23andMe community. Sharon’s husband, Rick, is a control volunteer for the Parkinson’s Progression Markers Initiative (PPMI), MJFF’s landmark biomarkers study.
As someone who worked in medical labs for over 25 years, Sharon keeps a close eye on the latest research. “I’m excited to see the new treatments that are being pursued today. Thanks to the efforts of the Fox Foundation and others, they’re not just trying to treat the symptoms anymore. They’re looking at the real underlying causes of the disease to stop it.”
Sharon hopes that her participation will help sort out the genetics involved in Parkinson’s disease and “will get us to a cure sooner—if not in time for me than for my sons, should they show any symptoms.”
If you have PD, you are entitled to a free lifetime membership to 23andMe, and will receive detailed, personalized reports indefinitely through the 23andMe Personal Genome Service™. You can also share your experiences directly with others in the online community.
Along with genetic testing, learn what other clinical trials for which you might be eligible by creating a profile at Fox Trial Finder, the Foundation’s clinical trial matching tool. And if you know your genetic status, be sure to answer the question about genetic testing.