At a Las Vegas gala celebrating Muhammad Ali’s 70th birthday, we premiÃ¨red the video “Give Us Your Hand,” featuring the boxing legend and his involvement with 23andMe’s Parkinson’s Disease Research Initiative.
By Emily Drabant
As the Research Manager for the 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
“Let me tell him that you’re ready for him. He just finished eating his chocolate doughnut in the other room.”
Yes. Those were the first words the wife of “The Greatest” used to refer to Muhammad Ali, and they were the perfect first words for her to say. At that point, I was thinking, “Muhammad Ali eats chocolate doughnuts? Yes, he is human! Hmmm… a chocolate doughnut sounds really good right about now…”
But I digress.
Rewind to the night before, when Emily, our Parkinson’s Disease Research Manager, and I landed at an airport near Ali’s home. Emily and I had no idea what to expect, but we knew we were excited. One of the world’s most recognized sports figures was about to join our fight against Parkinson’s, and we were about to watch it unfold.
The next morning, five dress changes and two IHOP breakfasts later, we started our drive to Ali’s home. Lonnie, his wife, graciously welcomed us in with an open mind and nothing short of an open heart. We immediately started setting the stage for the magic that was about to happen. It was a perfect morning; the light shone in at just the right angles, the air was filled with hope, and the ease of the set up was quite calming.
And then he appeared…Muhammad Ali came gliding in using the Ferrari of walkers, with the grace of a well-known fighter and the aura of a legend. Not normally star-struck, I didn’t know what to do. I wanted to shake his hand, give him a hug, and let him know how honored we were to have him on our team, but I could barely get out a “hello.” And just like that, he sat down in the beautiful lighting, and we started to film. I remember that first moment his hand appeared on the film monitor; it was so beautiful, I couldn’t help but start to get a little emotional in that quiet space. I knew our film would focus on his hands, but I really did not anticipate seeing the extent of the power that hands have, to draw you in and share with you a reflection of a life journey.
After filming his hands, we moved on to filming his face and some action shots with Lonnie. Muhammad was quiet, but it was clear that inside he has a vivacious, soulful spirit. Muhammad came to life and even smiled a bit, as his wife shared comical college stories. The charisma in his eyes was just like what I saw in every video and documentary I viewed in preparation of our visit.
What happened in those seven hours, I still can’t eloquently explain, but my hope is that our video will reflect a glimpse of our experiences that day.
As we reached the gates to leave his community, that’s when I lost my composure. I started to cry, not because I was sad or because I felt hopeless, but because I had realized that my experience with the Alis had really hit close to home. Muhammad and Lonnie are a replica of a couple that is very close to my heart. Lonnie cares for Muhammad with every inch of her mind and body. She stands boldly and never allows sadness into her home. Just like the other couple I know, after decades of marriage, they still laugh at each others’ jokes, exchange loving glances, and compassionately hold hands. And just like Muhammad, the man in that other couple has Parkinson’s Disease. Similarly, his eyes are full of life. And just like Muhammad showers his children and grandchildren with love, the love that the man I know has for me, is unparalleled.
My visit with the Alis was not about meeting “The Greatest” or a three-time heavy-weight champion, or any other well-deserved title he has earned throughout the years. It was about meeting a husband, a father, and a grandfather, who just like millions of Americans, looks Parkinson’s in the eye and says, “this is but another fight.” I am so proud to be a part of something so special. I truly believe that there will be “power in numbers” with this fight, and I know that 23andMe’s research will empower those who currently face Parkinson’s Disease and forever have an impact on the disease.
As I came back to the office that Monday morning, everyone wanted to know, “What was he like?,” “What did he say?,” “How did it go?” I couldn’t truly explain the magic that Muhammad, Lonnie, Emily, Elliott (our producer), Rick (our videographer), and I had experienced, as it was a moment in time, a memory that could not be re-created. But at the core, it was simple: Muhammad Ali is a gracious man, a human being just like you and me, who happens to be a man of great vision, a man who has changed lives, and a man who will continue to change lives for years to come.
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.”
“However for me it was a little bit different because when you say disease it is a lot different than hearing syndrome. Any “disease” sounds very fatalistic. So I had to do a bit of investigating.”
As Lonnie learned more, she and Muhammad started to get involved in research. When he realized that he could advocate for others with Parkinson’s, he decided to go public with his diagnosis. Muhammad and Lonnie founded the 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