At a Las Vegas gala celebrating Muhammad Ali’s 70th birthday, we premièred the video “Give Us Your Hand,” featuring the boxing legend and his involvement with 23andMe’s Parkinson’s Disease Research Initiative.23andMe Parkinson’s Community, I spend my days thinking about ways to advance this research faster, cheaper and more effectively than ever before. We launched this project in 2009 and since that time have been going full steam to make this the largest and most scientifically productive Parkinson’s research cohort in the world. We’ve succeeded on the first goal and already have the world’s largest group of people with Parkinson’s participating in genetics research. And we are making strides towards the second goal with significant scientific discoveries last year.While our progress is incredible, we have not yet reached our primary milestone of enrolling 10,000 people with Parkinson’s. Our team of scientists believes that having a group of that size will put us in a new era of Parkinson’s research. This will dramatically increase the odds of really understanding the genetics behind the disease. Scientists call this the “statistical power” of research. We call it the power of our research revolution.
Meeting ‘The Greatest’
By Melissa del Sol
As enrollment slowed around 6,000 people, I began to brainstorm on ways to get more people with Parkinson’s involved. We’ve worked directly with many patient advocacy groups to spread the word — especially with the Michael J. Fox Foundation, the National Parkinson Foundation, and The Parkinson’s Institute. But I wondered: how could we reach people who aren’t linked up with an advocacy group or a support group, and perhaps aren’t even very public about the fact that they have Parkinson’s? I began to think that if we did something really big — if we made a splash in a really public way — that it would truly raise awareness about this research and give people who want to participate the chance to do so. I hear from people with Parkinson’s all the time saying ‘I had no idea this was available. I didn’t know I could advance research from home”.In considering ways to make this research public in a really big way, we naturally started to think about working with a celebrity with Parkinson’s. At the top of that list is Muhammad Ali, one of the world’s most recognized athletes, who has been fighting Parkinson’s for 25 years. We spoke to one of our collaborators, Dr. Bill Langston, and he suggested we contact Muhammad’s wife, Lonnie. “When Lonnie says something is going to happen, she will make it happen,” he said.Those words were completely true. In December, my colleague, Melissa Del Sol, and I flew to Arizona to film Muhammad and interview Lonnie at their home. It was a magical experience and you can read more in Melissa’s blog.I didn’t plan to conduct the interview — the director of the video was going to handle that — but at the last minute he decided it made more sense for me to do it. I did it off the cuff and asked questions that I wanted to know as a scientist, as someone with personal connections to Parkinson’s, and as an admirer of Muhammad Ali.We talked about Muhammad’s diagnosis of Parkinson’s. When he first started showing symptoms they were quite minor — a tremor in his finger. The doctor said it was Parkinson’s syndrome, which meant that it would never progress into full blown Parkinson’s, but rather was just a Parkinson’s-like symptom. But over time his symptoms did progress. When they went to a Parkinson’s specialist he confirmed that it was in fact Parkinson’s disease. I asked Lonnie how they both reacted to this.“Muhammad deals with adversity a lot different than most people. To him, I don’t think it really registered, because he was still doing a lot of what he wanted to do,” she said. “He’s always had that thing about mind over matter … where he thought he could overcome this on his own. It took a real long time for him to realize that it wasn’t going to work that way.” Muhammad Ali Parkinson’s Center in Arizona in 1997 and have made tremendous contributions to research.“Muhammad and I have sort of grown up with the research,” Lonnie said. “A lot of research has been done to advance our understanding of what this disease is and where it comes from and some of the factors that may contribute to it. So we are very hopeful about the research. But when we first started out it was funny because we were told that in ten years we would have a cure and it’s just a function of money. Well now we know that’s not true. Ten years have come and gone and there has been a lot of money, but it’s a lot more complex than that. … We are really hopeful that this is one of the neurological diseases that will be given a cure.”This point is not lost on us at 23andMe. Indeed, the slow pace of research into Parkinson’s and many other diseases was what motivated us to launch our online research platform for all in the first place. We wanted to speed up research and do it bigger than ever before. We knew we needed to change the research model if we were going to make progress in the same lifetime as those who are currently battling Parkinson’s.“I think 23andMe is cutting edge technology that has been introduced to address this illness and to look at it in a different lens; getting to the genetic basis of what causes this illness, why do some people get it and why is it that some people don’t. The sooner we understand that,” said Lonnie, “the sooner we will be able to address treatment — better treatment — options for people.”She continued, “Looking at the genetics of the illness and the way 23andMe is doing it – getting a broad base of people to participate in the research – is extremely important to finding a cure. Then all the added things 23andMe does with regards to the person – giving them information about their personal health history and how to keep them healthy aside from Parkinson’s, because what people forget is that people with Parkinson’s don’t just have Parkinson’s, they have a lot of other illnesses. They may have hypertension, they may have diabetes. They could have a lot of other things which agitate the Parkinson’s that they have to live with. So getting all that information back about what works best for you on an individual basis … is very important. It’s a wonderful thing that 23andMe has done, trying to partner with other researchers around the country to try to answer some of these complex questions.”I left Arizona feeling inspired, full of gratitude and hope for the future of Parkinson’s research. When I was a neuroscientist at Stanford doing brain imaging research I never could have imagined that one day I would be working with Muhammad Ali on a video project. But there is no doubt in my mind that this video, and Muhammad and Lonnie’s involvement with 23andMe, will push 23andMe’s Parkinson’s research to new heights. Parkinson’s disease can be devastating for those with the illness, but sometimes we forget that such a daunting diagnosis can also inspire great courage.In this job working with the Parkinson’s community, I am continually awed by the reservoir of spirit found among those facing the disease. Just as Muhammad Ali inspired and continues to inspire generations of people with his courage and spirit, those with Parkinson’s who are bound together to fight this disease can inspire us all.Learn more and see the video at www.23andme.com/pd