Recently, we invited a local support group for men with early onset Parkinson’s to come to our office. The idea was to give these guys a chance to learn about about 23andMe and our Parkinson’s Research Community, but we probably learned as much if not more from them then they did from us.
23andMe’s Parkinson’s Research Community has already made great strides and discovered new insight into the disease. In a short time we’ve grown to include more than 7,300 participants. But we are still short of our goal of gathering together 10,000 people with Parkinson’s to join in our effort to beat the illness.
Over beer and pizza, the men talked about how surprising it was that, given the numbers of people with Parkinson’s, more haven’t joined 23andMe’s Research Community. But the group also acknowledged a common refrain for those dealing with a diagnosis — it is sometimes easy to go into denial about it.
Indeed looking around at the men in the room you wouldn’t know that any were suffering from a degenerative disease. Most of them are still in the prime of their lives, with thriving careers and active families. But it is this ability to maintain appearances that allows some with Parkinson’s to wait to tackle issues with their illness. It may also be why participation in Parkinson’s research as a whole is lower than for many other diseases.
It is here that the men said 23andMe could help the most by engaging and involving patients in research. During what turned into a great brainstorm session the men offered many ideas for ways that we could reach our goals and serve the research community.
We hope to continue these types of events for all of our research communities. If you have ideas or suggestions, please feel free to share them with us in the comments below.
If you or someone you know has been diagnosed with Parkinson’s disease, please learn more at www.23andme.com/pd.