As we near our goal of enrolling 10,000 patients in 23andMe’s Parkinson’s research community, we are ever more eager to share what we are doing.
Last month our CEO, Anne Wojcicki, along with our Parkinson’s research manager Emily Drabant, went to Washington D.C with two friends of 23andMe — Maryum Ali, a Parkinson’s activist and daughter of Muhammad Ali, and Rich Clifford, a former NASA astronaut who has become another powerful voice on behalf of patients.
The main motivation for going to Washington was to explain 23andMe’s Parkinson’s research initiative. Although we’ve been around for awhile, many people, particularly in Washington, just don’t know about our research model or understand what is so different about it. Anne explained research model and our broader mission, while Rich and Maryum gave the patient’s perspective.
Over the course of their time in D.C., Anne, Emily, Rich and Maryum were able to meet with the Congressional Parkinson’s Caucus, as well as individual senators and representatives to discuss the need for more research into the disease.
They also hosted a briefing on crowd-sourcing cures and the future of Parkinson’s disease research. During the briefing, held at the House of Representatives’ Visitors Center in September, Anne gave a quick primer on 23andMe’s unique research platform and in particular our Parkinson’s research initiative, now the largest Parkinson’s community for genetic research in the world.
Working with the Muhammad Ali family, the Michael J. Fox Foundation and others 23andMe has created an engaged community that has quickly helped to make breakthroughs, including finding two new genes associated with Parkinson’s.
During her presentation, Anne quoted Haydeh Payami, a New York State Department of Health neurodegenerative disease researcher, who said our research model could significantly accelerate disease research.
“What 23andMe did in a matter of years would have taken several decades and tens of millions of dollars” if done conventionally, she said.
The visit to D.C. offered a chance to explain how our research model engages individuals and allows them to come together, share information and participate in research. The model has accelerated the pace of research and engaged people in the process.
“People want to help each other,” and participate in research, Anne said. And they want access to their own genetic data to learn about their health, traits and ancestry.
Maryum Ali, whose father Muhammad Ali has battled Parkinson’s since 1984 and who recently joined forces with 23andMe to help encourage more patients to join the research initiative, said the research model offers incredible promise.
“So many discoveries that can be made through this kind of research,” she said.
For Rich Clifford, a former NASA Astronaut who flew on the Space Shuttle Atlantis two years after getting his own diagnosis for Parkinson’s, said that 23andMe offers people an opportunity learn of their genetic risk for the disease giving them a chance to take steps to do something about it.
“I’m all about early detection,” he said.
The earlier someone learns of their risk the more they can do, Rich said.
Because of new treatments much can be done to mitigate the effects of the disease if it’s detected early.
The visit accomplished what we hoped by introducing some of the policy makers in Washington to 23andMe and the possibilities of our research into Parkinson’s.
Check out some of our other recent posts on Parkinson’s:
• Why Not Participate? One Patient’s Perspective
• 23andMe’s Latest Publication Shines Light on Male Pattern Baldness and Unexpected Associations with Disease
• 23andMe and Parkinson’s: Past, Present, and Future
• The State of the Science of Parkinson’s Research