We wanted to share this perspective that appeared this week on the Michael J. Fox Foundation blog from, Claudia Revilla, a long-time 23andMe Parkinson’s Research participant. Claudia has been inspiring us for years and we want others to hear her voice.
First impressions. For those of us with Parkinson’s disease (PD), we all remember that dreadful day the doctor said:
“You have Parkinson’s.”
In my case, almost ten years ago, those words only made sense because I knew that something was wrong — but what followed is what set the direction of my future actions. I carefully listened to every word the doctor was saying and when she asked if I knew of any blood relative with Parkinson’s, I responded with a “no.”
Immediately thinking of my children, I asked:
“Is Parkinson’s disease genetic?”
What Can I Do?
My doctor responded that in most cases, the cause of PD is unknown. We can’t confirm the disease is only genetic. Scientists are working to uncover and understand genetic components and other factors that could lead to Parkinson’s like aging and the environment.
I went home to my private “library” — the internet — and quickly got involved with The Michael J. Fox Foundation. I was determined to help find a cure.
As my grandma used to say, “If you want something done right, you have to do it yourself.”
Participating in 23andMe Research
Since I can’t cure this disease all by myself, I joined efforts with those already in the search. Through Fox Trial Finder, I was matched with many opportunities to participate in PD research. One of them was genetic testing through the personal genetics company 23andMe. I immediately remembered the conversation with my doctor — and I signed up right away.
23andMe mailed me a spit kit. I followed the simple instructions — I spat in the tube and sent it back. When I got the results, just a couple of weeks later, I was, and still am in awe. I learned about me. I had information about my genetics that I did not know about.
I took this opportunity to provide information about my own disease to be part of a larger 23andMe database with other PD patients to help find the many “whys” and “hows” of Parkinson’s. This is teamwork — through technology — not just to solve problems, but to prevent them from happening.
The Power of Knowledge
I never cared much about my own ancestry, but I do care about my health and the health of my future generations. Deciphering the code of what we are made of and how we work is like getting the blueprint of a building — using it to fix whatever breaks down or needs improvement.
Our blueprint is the human genome, wonderful and unique to each of us. It could lead us to a way to detect, prevent and cure diseases. The power of knowledge about ourselves and our bodies is an inalienable right. It is our choice, whether we use it or not. Scientists researching incurable, progressive and devastating diseases are using genetics to find cures and answers to our ailments.
Sharing My Story
During October, I had the opportunity to participate in a press conference for 23andMe. Myself, along with two other patients, shared our story about getting genetic testing that helped raise flags on important health issues. We all first consulted with our physicians, but the single most important action we took, was getting a 23andMe spit kit. It helped sketch our personal blueprints and empowered us to advocate for our own health.
I wish there was a test to tell me that I have Parkinson’s. Or, even before I was diagnosed, a gene that would say definitively that I would get the disease. Because I could have taken action much earlier on. But I know these scientific breakthroughs will happen. I am taking action right now to help researchers find clues about Parkinson’s.
Researchers have identified a handful of genes, like LRRK2 and GBA, that increase your risk of getting PD. And this has been made possible thanks to the volunteers willing to participate in genetic research. Many more findings will follow with the continued participation of volunteers in genetic research. 23andMe is making this possible and accessible to everyone.
Back in the Middle Ages, no one dared to sail past the horizon because they believed Earth was flat. It took one brave person to try it — that was a true big step for mankind. Organizations like 23andMe and The Michael J. Fox Foundation are now sailing to the newest horizon. I, too, will follow, until we reach our destination.
Interested in participating in genetic research? MJFF’s online clinical study Fox Insight is accelerating breakthroughs by capturing the experiences of people with and without Parkinson’s. Through a collaboration with consumer genetics company 23andMe, people with Parkinson’s who join Fox Insight can access the 23andMe Health + Ancestry Service at no cost and add their genetic information to the study. Register at foxinsight.org.
Claudia Garrido-Revilla, member of the Foundation’s Patient Council, has served as a Fox Trial Finder Ambassador and Team Fox member with The Michael J. Fox Foundation. Her advocacy and service activities are not limited to the Parkinson’s community. She has found that service and advocacy are necessary to keep a community together and healthy, and that volunteers and leaders are needed everywhere and always.