<img loading="lazy" decoding="async" class="aligncenter wp-image-14448 size-full" title="EMD_Iowa_highres" src="http://35.88.189.111/wp-content/uploads/2012/07/EMD_Iowa_highres.jpg" alt="" width="1978" height="2106" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/07/EMD_Iowa_highres.jpg 1978w, https://blogcms.23andme.com/wp-content/uploads/2012/07/EMD_Iowa_highres-282x300.jpg 282w, https://blogcms.23andme.com/wp-content/uploads/2012/07/EMD_Iowa_highres-768x818.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/07/EMD_Iowa_highres-962x1024.jpg 962w, https://blogcms.23andme.com/wp-content/uploads/2012/07/EMD_Iowa_highres-827x880.jpg 827w, https://blogcms.23andme.com/wp-content/uploads/2012/07/EMD_Iowa_highres-1108x1180.jpg 1108w" sizes="auto, (max-width: 1978px) 100vw, 1978px" />23andMe&#8217;s Emily Drabant, PhD, speaking at a Parkinson&#8217;s event in Iowa.
23andMe is tantalizingly close to reaching the goal of enrolling 10,000 patients in our<a href="https://www.23andme.com/pd/"> Parkinson’s research community</a>.
We’re past the 8,000 mark and the pace of enrollment is now more than two-and-a-half times what was a year ago, but we’re not there yet. Getting to 10,000 is important because as any researcher will tell you, there is strength in numbers. Having what is already the world’s largest Parkinson’s community for genetic research helped us discover new genetic variants associated with Parkinson’s – including a potentially protective factor.
While we’ve already dramatically accelerated the pace of Parkinson’s research, we still have much work to do both in better understanding the disease and in finding new treatments.
Later this month, Emily Drabant, PhD, 23andMe’s research manager for our<a href="https://www.23andme.com/pd/"> Parkinson’s community,</a> will speak at the<a href="http://my.clevelandclinic.org/brain_health/default.aspx"> Cleveland Clinic’s Lou Ruvo Center for Brain Health</a> in Las Vegas about 23andMe’s unique patient-centered research model, what we know about the genetics of Parkinson’s and some of the latest advances in Parkinson’s research. The presentation is specifically for patients at the Cleveland Clinic, which is one of our Parkinson’s research collaborators. We’re recruiting 1,000 Parkinson’s patients from the Cleveland Clinic for a sub-study that will integrate clinical data with genetics.
<img loading="lazy" decoding="async" class="aligncenter wp-image-4013 size-full" title="geneticresearch7" src="http://35.88.189.111/wp-content/uploads/2009/07/geneticresearch7.jpg" alt="" width="350" height="268" srcset="https://blogcms.23andme.com/wp-content/uploads/2009/07/geneticresearch7.jpg 350w, https://blogcms.23andme.com/wp-content/uploads/2009/07/geneticresearch7-300x230.jpg 300w" sizes="auto, (max-width: 350px) 100vw, 350px" />
Parkinson’s is an extremely complex disease. Uncovering more about the role genetics plays in Parkinson’s could provide valuable information about the development of the disease and how to combat it. Last year 23andMe found<a href="http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1002141"> two new genetic associations</a> with Parkinson’s and more recently found a genetic variant in the gene SGK1 that is potentially protective against the disease. With the help of the Michael J. Fox Foundation,<a href="http://www.scripps.edu/newsandviews/e_20111031/lograsso.html"> the Scripps Research Institute</a> is following up the SGK1 discovery with lab studies that we hope will lead to new treatments.
We hope to add more breakthroughs as we reach our goal of 10,000 members in the Parkinson’s Research Community.
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Participate in research!<img loading="lazy" decoding="async" class="alignright size-thumbnail wp-image-12404" style="margin-bottom: 10px;" title="Parkinson's disease fight arm" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/pd_fist_300px-150x150.png" alt="" width="125" height="125" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/pd_fist_300px-150x150.png 150w, https://blogcms.23andme.com/wp-content/uploads/2012/04/pd_fist_300px-271x271.png 271w" sizes="auto, (max-width: 125px) 100vw, 125px" />
<div>As a member of 23andMe, you can participate in research simply by taking <a href="https://www.23andme.com/you/23andwe/surveys">surveys</a>. If you have Parkinson&#8217;s disease or know someone who does, learn more about joining our <a href="https://www.23andme.com/pd">Parkinson&#8217;s Disease</a> initiative!</div>
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Of course, the success of the 23andMe’s Parkinson’s Community has come with the help of some very active members of the community, including more than 200 Parkinson’s “Ambassadors,” who’ve helped spread the word about the research. 23andMe has also received the support of some great people, Michael J. Fox and Muhammad Ali, who have both lent their efforts to the cause. Finally we’ve been helped by some fantastic partners like the Cleveland Clinic, the<a href="https://www.michaeljfox.org/"> Michael J. Fox Foundation</a>, the<a href="http://www.thepi.org/"> Parkinson’s Institute</a>, the National Parkinson Foundation, the Parkinson’s Association of San Diego, the Cure Parkinson’s Trust and Parkinson’s UK.

23andMe Blog

23andMe Blog Team

23andMe’s Parkinson’s Community is Almost There

By Lauren Anderson
For many, the decision to participate in genetic research is not a trivial one. But for Gary Schmitz, he didn’t think twice. “For me,” he says, “the question was why wouldn’t you want to contribute?”
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Not long after The Michael J. Fox Foundation and 23andMe, <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">announced</a> a new research community for Parkinson’s patients, Gary signed on. In January 2010, he became part of what would become the world’s largest Parkinson&#8217;s community. He shared his spit, using 23andMe’s DNA kit.
“It was easy to do and didn’t require much from me,” Gary says. He found the results from his test interesting–and comprehensive. Diagnosed with Young-onset Parkinson’s at 38, Gary, now 50, learned he was only at a slightly higher than normal risk for developing PD. He was most surprised by the amount of information he received–about his maternal and paternal bloodlines, food preferences, muscle performance. Happily, he learned he was not likely to go bald, which he hopes is right. “I even found out if my <a href="https://www.23andme.com/topics/traits/earwax-type/">earwax</a> was moist or not,” he says.
Learning more about his genetic profile was actually something of a relief to Gary. Since he had little genetic predisposition to Parkinson’s, such as carrying the LRRK2 mutation, he now worries less about his two children developing Parkinson’s. But even if his results had been different, having that knowledge makes a difference, he says. “If you’re at risk for something, then you can do something about it. You may know you need to see a certain type of doctor twice a year versus once.”
<div style="float: right; text-align: justified; width: 180px; background-color: #eee; padding: 15px; margin-left: 10px;">For Father&#8217;s Day 
If your Dad has Parkinson&#8217;s, show him you care by making a long-term investment in his health and the future of Parkinson&#8217;s disease research. At no cost, give him access to his genetic data and the growing Parkinson&#8217;s Research Community (~7,500 strong!) at 23andMe. Visit <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">www.23andme.com/pd</a> to sign him up.</div>
Participating in genetic research was only the beginning for Gary. Since then, he completed a profile on <a href="https://foxtrialfinder.michaeljfox.org/" target="_blank" rel="noopener noreferrer">Fox Trial Finder</a>, The Michael J. Fox Foundation’s clinical trial matching site. Through this tool, he found–and completed–a study on cognition and Parkinson’s at the University of Texas Southwestern Medical Center, which is near his home in the Dallas area. He also connected with Ceregene’s CERE-120 trial, for a potentially neuro-protective gene therapy. However, as he was being screened for this trial, Gary learned he had suffered a small stroke at some point. While this made his participation in the trial no longer possible, it was information he didn’t have before. And it hasn’t dampened his determination to participate in future clinical trials–he’s still looking to contribute wherever he can.
Like his attitude toward genetic research, Gary wonders why you wouldn’t participate in clinical research. “I want everyone to get involved through Fox Trial Finder,” he says. And he’s encouraging friends and family members to sign up.
Gary has also taken action through Team Fox–“to do something positive,” he says. In Texas, he has hosted several Team Fox events, including a pancakes breakfast and a shopping event on his town’s Main Street. His sister in Milwaukee, Wisconsin, has gotten involved, too. She hosted a comedy night and an event at a Milwaukee Brewers’ game.
Through Team Fox and clinical trial participation, Gary is happy to do his part to help speed a cure and support MJFF’s efforts. “The Michael J. Fox Foundation is a sign of hope for me,” he says. “I know they’re working in one direction–toward improved treatments and a cure. That’s just what I need.”

Lauren Anderson

Why Not Participate? One Patient’s Perspective

<img loading="lazy" decoding="async" class="alignright size-full wp-image-10815" title="Anne black and white" src="https://blog-api.23andme.com/wp-content/uploads/2012/01/Anne-black-and-white.jpg" alt="" width="110" height="166" />
[Ed: A clarifying addendum has been added to the end of this post. &#8211; 6/01/12]
23andMe has a substantial research arm with more than 20 scientists dedicated to making meaningful discoveries that will improve the lives of all of us.  We’ve made a number of discoveries that we’ve <a href="http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1000993" target="_blank" rel="noopener noreferrer">published</a> in <a href="http://www.plosgenetics.org/article/info%3Adoi%2F10.1371%2Fjournal.pgen.1002141" target="_blank" rel="noopener noreferrer">peer reviewed journals</a> and on our website.
As we make these discoveries, we have often debated: what is the best way to make sure that genetic breakthroughs translate into real-world benefits?  We want to make discoveries that will impact your life and the lives of everyone on the planet.  We do not want our discoveries to just be an academic pursuit &#8212; we want to meaningfully improve lives.
Our patent, “<a href="http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&amp;Sect2=HITOFF&amp;d=PALL&amp;p=1&amp;u=%2Fnetahtml%2FPTO%2Fsrchnum.htm&amp;r=1&amp;f=G&amp;l=50&amp;s1=8,187,811.PN.&amp;OS=PN/8,187,811&amp;RS=PN/8,187,811">Polymorphisms Associated With Parkinson’s Disease</a>” is expected to issue on Tuesday, May 29, 2012. This relates to our discovery of a variant in the SGK1 gene that may be protective against Parkinson’s disease in individuals who carry the rare risk-associated LRRK2 G2019S mutation.  Our patent is an important step in ensuring that we’ve done all we can towards successful translation of this discovery.  If the follow up work we are now doing with the Scripps Research Institute and the Michael J. Fox Foundation looks promising and moves towards drug development, the patent will be important for a biotech or pharmaceutical company to pursue drug development.
We believe patents should not be used to obstruct research or prevent individuals from knowing what&#8217;s in their genome. We believe that everyone has a right to know their genomes &#8212; their sequence of As, Ts, Cs, and Gs &#8212; and should be able to access them should they want to.  This has been our guiding principle since day one, and 23andMe has pioneered the ability for individuals to have unfettered access to their genomes.
We recognize that patents are complicated and can be controversial. Patents were created to protect innovation. Is discovering the function of a gene an innovation?
The question of whether innovations related to genetics can be patented is in hot debate as evidenced by recent rulings related to <a href="http://www.supremecourt.gov/opinions/11pdf/10-1150.pdf" target="_blank" rel="noopener noreferrer">Prometheus</a> and Myriad patents.
We want to emphasize that we are firm in our belief that individuals should have access to their own genetic data. We will continue to pursue patents that we believe will eventually benefit us all. The majority of our customers have opted to participate in research. Thanks to that community, we have been able to make an incredible number of novel discoveries. We want those discoveries to move from the realm of academic publishing to the world of impacting lives by preventing, treating or curing disease.
Addendum &#8212; June 1, 2012:
The patent announcement has generated a lot of discussion. In addition to reiterating our core beliefs I&#8217;d like to clarify a few points about our perspective:
23andMe will not prevent others from accessing their genetic data or its interpretation specific to our patents.
Other entities can present information about the genetic associations covered in our patents without licensing fees. As has always been the case, 23andMe customers can freely apply their raw genetic data to other interpretation tools whenever they wish.
23andMe is a business with a mission to improve lives.  
We sell a service to our customers and we conduct research, on our own and with partners, that we believe will lead to better treatments, diagnostics, and prevention of disease. We aim for these discoveries to benefit everyone.
Patents give organizations researching and developing new drugs confidence that their significant investments will be commercially viable.  
Developing new drugs and treatments costs time and money. A lot of time and money. Often the only way a company will even think about pursuing a drug lead is if they have assurance that they can recoup their investment. Having patent protection over the entire line of discovery gives a company confidence to invest in this resource-intensive process.
Many of you, <a href="http://blog.michaeljfox.org/2012/05/patent-23andme-step-meaningfully-improving-lives/">especially in the Parkinson&#8217;s community</a>, saw this as a major milestone and the first step in potentially having a meaningful impact on the lives of Parkinson&#8217;s patients. Our ultimate goal is to make discoveries that will benefit everyone.

Announcing 23andMe’s First Patent

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What Causes Parkinson&#8217;s Disease? 

The symptoms of Parkinson’s are thought to stem from a loss of dopamine-producing brain cells that normally control movement, but what causes these cells to die off in the first place is difficult to answer. Toxins and other environmental factors can play a role, but so does genetics. In some cases Parkinson’s is primarily due to genetics, in other cases it is largely environmental, and most of the time it’s a mix of the two.
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About 1.5 million Americans have Parkinson’s and about 50,000 new patients are diagnosed each year. Many of us have seen loved ones suffer through years of trembling and muscle weakness knowing that things will eventually get worse because there isn’t a cure.
But that’s where science comes in. The primary goal of the more than 800 Parkinson&#8217;s genetic association studies published to date is to identify the genetics underlying this condition so that we can understand what goes wrong and develop therapies.
Dozens of genetic factors have been linked to Parkinson’s disease and some of these findings meet 23andMe’s internal scientific standards and are reported to customers. We’ve been providing genetic results for Parkinson’s to customers since 2008 and last week we added five more factors to our report.
(See below for a timeline of 23andMe’s contributions to Parkinson’s research and history of providing customers with genetic results for Parkinson&#8217;s.)
<div style="border: 1px solid #eee; margin-top: 20px; margin-bottom: 15px;"><img loading="lazy" decoding="async" class="alignnone wp-image-12468 size-full" title="Slide2" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/Slide23.jpg" alt="" width="600" height="600" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/Slide23-150x150.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Slide23-271x271.jpg 271w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Slide23-372x372.jpg 372w" sizes="auto, (max-width: 600px) 100vw, 600px" /></div>

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23andMe customers can view their genetic results for Parkinson&#8217;s Disease in their account (note that this report requires an additional opt in).
Not yet a customer? <a href="https://www.23andme.com/store">Visit our store</a>!
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Our first report on Parkinson’s disease included the G2019S mutation in the LRRK2 gene. Only about 1-2% of the general population develops Parkinson’s, but studies have shown that about 50% of people with the G2019S mutation will develop the disease in their life time.
We later added the G2385R mutation in the LRRK2 gene, which is applicable to people with Asian ancestry and is associated with about three times higher odds of developing Parkinson’s.
In April of 2011 (and timed for <a href="http://www.parkinson.org/" target="_blank" rel="noopener noreferrer">Parkinson’s disease awareness</a> month) we added variants in the GBA, SNCA and MAPT genes to our genetic report on Parkinson’s. The N370S mutation in the GBA gene is associated with about four times higher risk of Parkinson’s and may exert its influence by making cells more sensitive to toxins. The rest of the factors reported by 23andMe, including the SNCA and MAPT variants and versions of  PARK16, DGKQ, BST1, STK39 added last week, have much smaller effects on risk for the disease but are much more common in the population than LRRK2 or GBA mutations.
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You Can Help!
<div>For Parkinson’s Awareness Month we’ve posted stories, interviews and given updates on the state of research on Parkinson’s, which includes 23andMe&#8217;s very own <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">Parkinson’s disease research community</a>.</div>
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<div>With your help, we topped our goal of enrolling 7,500 participants by the end of April and are en route to our long-term goal of 10,000 participants.</div>
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<div>If you have Parkinson’s,  <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">join our Parkinson’s community</a> and participate in research. If you don’t have Parkinson’s, contribute by becoming a <a href="https://www.23andme.com/store/cart/" target="_blank" rel="noopener noreferrer">23andMe customer</a>  and answering surveys. You can make a difference!&#8221;</div>
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Alongside reporting genetic results to customers we’ve also been carrying out research on Parkinson’s. Over 7,000 individuals have enrolled in our Parkinson’s Disease community and with their help and the participation of other customers we’ve <a href="http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1002141" target="_blank" rel="noopener noreferrer">discovered new genetic factors</a> for Parkinson’s that we <a href="https://www.23andme.com/health/Parkinsons-Disease-Preliminary-Research/" target="_blank" rel="noopener noreferrer">report back to our customers</a>. We’ve also identified a genetic factor in a gene called SGK1 that may protect individuals with risky versions of LRRK2 from developing Parkinson’s.
We&#8217;re currently partnering with other researchers to see if this initial finding can lead to new treatments.
People with Parkinson’s disease still suffer too much, but it’s clear that research efforts over the last decade are getting us closer to understanding what causes this disorder. It’s also becoming clear that early detection can help delay the progression of Parkinson’s and that’s good news all around. There are many more outstanding questions, for instance understanding how genetic and environmental factors interact, and hopefully in time we’ll find some answers. The 23andMe community has progressed Parkinson’s research tremendously and we hope that you’ll continue to <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">give us your hand</a> in the years ahead.
The author’s paternal grandfather passed away from Parkinson’s disease in 2005. He was deeply loved and in her thoughts as she wrote this piece.

23andMe and Parkinson’s: Past, Present, and Future

Andrew Rubin and Ricardo Villarreal’s film Ride With Larry is about more than a guy with Parkinson’s pedaling across South Dakota.
It&#8217;s about the singular idea that whatever life throws at you the best choice is to live to the fullest.
“I’ll never give up,” Larry Smith says at one point during the film. “I know that this will some day take me, but I’m not going to walk away from life.”<iframe loading="lazy" src="https://www.youtube.com/embed/SNblbb3tyGI" width="560" height="315" frameborder="0"></iframe>
We first heard about Larry when Andrew and Ricardo came through town to interview our CEO Anne Wojcicki and Emily Drabant, who heads up our <a href="https://www.23andme.com/pd/">Parkinson’s Research Community</a>.
Larry is a retired police captain who opened a small town bakery. His example has already inspired his family and the people in his small town of Vermillion. Andrew and Ricardo hope to inspire others with Larry’s story. For Andrew the film is also personal as his own father and a cousin are living with Parkinson’s. He hopes to rally people behind efforts to research the disease, including 23andMe’s own <a href="https://www.23andme.com/pd/">Parkinson’s Research Community</a>.
A few days ago we got wind that “Ride with Larry” was in post-production, along with the note, “Would we like to see a short preview?”
It’s an awesome peek at what the filmmakers have been up to and we&#8217;re grateful that they’ve shared it with us.
Andrew and Ricardo, who are still busy editing, also were gracious enough to answer a few questions.
How is Larry doing since you guys finished up?
<img loading="lazy" decoding="async" class="aligncenter wp-image-12535 size-full" title="AndrewRicardo" src="http://35.88.189.111/wp-content/uploads/2012/04/AndrewRicardo.jpg" alt="" width="525" height="276" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/AndrewRicardo.jpg 525w, https://blogcms.23andme.com/wp-content/uploads/2012/04/AndrewRicardo-300x158.jpg 300w" sizes="auto, (max-width: 525px) 100vw, 525px" />
Andrew and Ricardo: Larry is doing great; he is obviously very excited about the film and can&#8217;t wait for it to be finished. Larry has become a small celebrity in his state of South Dakota and continues to inspire his community in many ways, including his determination to get up everyday and bake his famous bread.  Since we finished shooting last summer, Larry also has a new granddaughter.
In terms of his battle with Parkinson&#8217;s, Larry continues to fight.  He  exercises  regularly and this June the people of Vermillion, SD are planning a one day ride in honor of Larry to continue raising awareness for Parkinson&#8217;s.
What have you learned or are most excited about from the experience of shooting this film?
Ricardo: What I learned from shooting this incredible story is that life is so precious and there is no excuse not to enjoy it and live it the best way you can.
Although there&#8217;s no cure for Parkinson&#8217;s yet, we have the power and the choice to live life to the fullest. This experience also taught me that real heroes can be found within ordinary people. You don&#8217;t have to be someone famous, rich, or powerful to be a role model and to make a positive impact in your community.
The excitement about shooting the film is that we have this great opportunity to share this inspiring story with the world and spread Larry&#8217;s message of hope.
<img loading="lazy" decoding="async" class="alignright size-medium wp-image-12536" title="Ride with Larry" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-200x300.jpg" alt="" width="200" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-200x300.jpg 200w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-768x1152.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-683x1024.jpg 683w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-587x880.jpg 587w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-787x1180.jpg 787w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Ride-with-Larry-scaled.jpg 1707w" sizes="auto, (max-width: 200px) 100vw, 200px" />
At the same time,  we are also excited to work together with great organizations that are working hard to find a cure for Parkinson&#8217;s and we want to be part of this movement. Nothing would be more rewarding than to know our film has inspired many people to live better. Additionally, we believe our film can help bring more people to contribute to Parkinson&#8217;s research. Everyone can make a difference, and the more people get involved, the closer we will be to finding a cure.
Andrew: In the process of making this film I learned to embody the very lessons I&#8217;ve witnessed behind the lens of a camera.  Making Ride with Larry has given me perspective.  Every day I watch the struggles of both my father and Larry as they battle Parkinson&#8217;s and Larry&#8217;s wife Betty and my own mother as they confront the difficulties of life as a caretaker.
In the act of telling Larry&#8217;s story, I have come to recognize that in sharing his message, I must also learn it and live it.  The struggles of Parkinson&#8217;s are of the whole body and mind.  They are second-to-second, nerve ending to muscle.  And they choose not to succumb.  If I can face my challenges, no matter how small or large, with the gift of perspective, then I know I can rise to meet them.
It has been amazing not just to be a witness to Larry&#8217;s victory, but to be a part of his ride.  The next exciting part of this journey will be in sharing this story with the world and working to get as many people as possible involved in the Parkinson&#8217;s community and the search for a cure.
What&#8217;s next?
Ricardo: With &#8220;Ride with Larry&#8221;, the next thing is just around the corner: to show this film to audiences everywhere and to grow this movement.

Ride With Larry

<img loading="lazy" decoding="async" class="alignright wp-image-12514 size-medium" title="MJF, Todd and Anne" src="http://35.88.189.111/wp-content/uploads/2012/04/MJF-Todd-and-Anne-300x189.jpg" alt="" width="300" height="189" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/MJF-Todd-and-Anne-300x189.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/04/MJF-Todd-and-Anne-768x483.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/04/MJF-Todd-and-Anne.jpg 864w" sizes="auto, (max-width: 300px) 100vw, 300px" />Todd Sherer, CEO of the Michael J. Fox Foundation, with Michael J. Fox and Anne Wojcicki
Michael J. Fox is a great actor, but his smiles and good humor during a visit to 23andMe headquarters in Mountain View this week were fully sincere.
<h2>Living with Parkinson&#8217;s</h2>
“I really mean what I say when I express optimism, positivity, and gratitude,” Michael said. “I don’t have those dark moments, but at the same time, having said that, I know people with Parkinson’s suffer depression. I know I live a rarified life and have had good fortune. I don’t mean to compare my attitude to others.”
His stop at 23andMe was part of a sort of mini-West Coast tour with stops in Los Angeles, Seattle and Portland. Joining him were other officials from the <a href="http://www.michaeljfox.org/" target="_blank" rel="noopener noreferrer">Michael J. Fox Foundation</a>, which included CEO Todd Sherer and Debi Brooks, the foundation’s co-founder and Executive Vice Chairman.
<h2>A Force for Research</h2>
Since it was formed just over a decade ago, the Michael J. Fox Foundation has raised more than $285 million for Parkinson’s research, and the actor has brought worldwide attention to the illness.
The foundation has also been an intimate partner with 23andMe’s work on Parkinson’s. (The Foundation posted a blog on the visit <a href="http://blog.michaeljfox.org/" target="_blank" rel="noopener noreferrer">here</a>.) While the partnership has already borne fruit, initially, it required the foundation to take a risk on us, said our CEO Anne Wojcicki.
<img loading="lazy" decoding="async" class="alignright size-medium wp-image-12527" title="Anne&amp;MJF" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/AnneMJF-300x266.jpg" alt="" width="300" height="266" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/AnneMJF-300x266.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/04/AnneMJF-768x682.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/04/AnneMJF-880x781.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2012/04/AnneMJF.jpg 1000w" sizes="auto, (max-width: 300px) 100vw, 300px" />
“None of this could have happened if we didn’t partner with the Michael J. Fox Foundation,” Anne said during the visit. “I come from the research world, and a lot of scientists don’t like to take risks or try something new.”
<h2>A New Kind of Research</h2>
But the gamble has paid off. In a short time, 23andMe’s <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">Parkinson’s Research Community</a> has grown to more than 7,500, the world’s largest Parkinson’s community for genetic research. In that time, we’ve been able to replicate known genetic associations for Parkinson’s; we’ve discovered two new genetic associations with the disease; and late last year, we found a genetic variant that is possibly protective against the disease.
This is all heady stuff, said Michael.
“What excites me is what the Fox Foundation is doing with 23andMe,” he said. “Especially after today…it’s crucial work you’re doing.”
Still boyishly handsome at 50, Fox has become known not just for his acting and good humor but also for his philanthropy and the work he has done on Parkinson’s. First diagnosed in 1991, he has continued to act while raising his four children and working with the foundation.
During his visit, he asked questions of employees at 23andMe.
<h2>Big-Time Heroes</h2>
He said he had inspired so many people, and he was asked who had inspired him.
“My big-time heroes are Gandhi, (Martin Luther King), and Nelson Mandela,” he said. “People who respond to negativity with positivity, optimism, and non-violence. Those are my mega heroes. But the Parkinson’s patient community inspires me. The scientific community inspires me, and anyone seeking knowledge inspires me. So, you all inspire me. And my kids.”
Fox said he’d spoken with an English researcher looking into optimism and was told his genetics fit the profile of someone with a predisposition toward optimism.
“I like to say it’s in my genes,” he said.
And, of course, he got a few movie star questions: 
“Did you really ride on a hoverboard for Back to the Future II?
“I had a pink piece of plastic stapled to my feet, and I was strapped hanging from a cherry picker,” he said.
“If we collectively find a cure, would you agree to star in another Back to the Future movie?
“Sure, but I’ll play Doc this time.”

Michael J. Fox, Our Big-Time Hero

If you were facing a daunting diagnosis you would want the news to come from someone like Dr. J. William Langston.
Engaged and intelligent, he has the kind of optimism you don’t expect from a physician who has spent decades working to unravel the complexities of Parkinson’s disease.
<img loading="lazy" decoding="async" class="alignright wp-image-12362 size-medium" title="Langston" src="http://35.88.189.111/wp-content/uploads/2012/04/Langston-253x300.jpg" alt="" width="253" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/Langston-253x300.jpg 253w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Langston-741x880.jpg 741w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Langston.jpg 750w" sizes="auto, (max-width: 253px) 100vw, 253px" />
“Things have changed dramatically in that time,” Dr. Langston says, his eyes squinting as he smiles. “There is a lot to be optimistic about.”
Some of those changes are because of the work he’s done. As the Scientific Director, Chief Executive Officer and Founder of the<a href="http://www.thepi.org/"> Parkinson’s Institute</a>, Dr. Langston was recently singled out for his work and awarded the 2012 Robert A. Pritzker Prize for Leadership in Parkinson&#8217;s Research.
After picking up the award in New York, Langston, who also serves on 23andMe’s Parkinson’s Research Community<a href="https://www.23andme.com/pd/#section4"> Scientific Advisory Board</a>, stopped by our office to talk about the state of the science of Parkinson’s and share a little about his career in the process.
In a way, Langston is already the doctor for anyone with Parkinson’s – his contributions to research, treatment and diagnosis of the disease are that important. And those contributions started almost 30 years ago with the famous case of the “Frozen Addicts.”  This fascinating medical mystery, solved by Dr. Langston, involved a handful young people who in a matter of days became debilitated with advanced Parkinson’s symptoms that would normally have taken a patient decades to develop. Langston found that they were all linked to the same batch of synthetic heroin, contaminated with<a href="https://en.wikipedia.org/wiki/MPTP"> MPTP</a>, a neurotoxin that “lasers like a Nike missile on the same nerve cells in the brain that die in Parkinson’s,<a href="https://en.wikipedia.org/wiki/Substantia_nigra"> (in the) substantia nigra</a>,” Dr. Langston said.
“That really revolutionized research because it gave us a model and a way to study neurological cell death in Parkinson’s,” he said.
<img loading="lazy" decoding="async" class="alignright size-medium wp-image-11373" title="researchrevolution-fist" src="https://blog-api.23andme.com/wp-content/uploads/2012/02/researchrevolution-fist-173x300.jpg" alt="" width="173" height="300" />
That work led Langston to found the Parkinson’s Institute, a place where basic research, clinical research and patient care could be done side-by-side. He believes it gives context and perspective for his researchers.
“Anyone working on this disease will feel a sense of urgency, because they see it,” Dr. Langston said.
And in the last 30 years the work has helped produce some of the insights that have significantly changed outcomes for people with Parkinson’s.
Doctors have changed how they use drugs to treat the disease. For a time the problem wasn’t so much that the drugs didn’t work but that side effects would build up to the point where doses would have to be lowered right at the time when they were needed most. Now, doctors are getting much better at calibrating the use of medicine and managing the symptoms of Parkinson’s.
While there have been great leaps in understanding of the disease, insight into its progression and avenues for research into a cure, Dr. Langston pointed out that simply diagnosing Parkinson’s early enough – when symptoms are largely benign – and then using medication to halt or drastically slow its progression, would be a great success. Here he felt researchers are very close.
“Already we are on the cusp of bringing out new drugs that work against these side effects and if you put that together with an early diagnosis, you are looking at really managing the disease and giving people a good life,” said Dr. Langston. “Because those early symptoms are so mild, if you get in there and halt it at that point that’s almost as good as a cure.”
This, in part, is why finding the early indicators of the disease is so important. 
When he first started his association with 23andMe, he would get questions from those who wondered why you would want to know if you had a genetic risk for Parkinson’s.
“I hear that less and less I think because 23andMe is helping to change that,” he said. “People see value in it. Knowledge is power. The more you know and understand the more you can do.”
Beyond looking at genetics there are other early indicators. His team is looking at things like autonomic innervation of the heart and REM sleep patterns, or loss of the sense of smell as early indicators for the disease.
“It’s a major focus of the research to find the markers before you have any disability,” he said. “We’re hoping that 23andMe will be part of this effort to find the tools where we can pick this up.”
<img loading="lazy" decoding="async" class="alignright size-medium wp-image-12363" title="Pritzker-photo" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/Pritzker-photo-254x300.jpg" alt="" width="254" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/Pritzker-photo-254x300.jpg 254w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Pritzker-photo-768x906.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Pritzker-photo-868x1024.jpg 868w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Pritzker-photo-746x880.jpg 746w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Pritzker-photo-1000x1180.jpg 1000w, https://blogcms.23andme.com/wp-content/uploads/2012/04/Pritzker-photo.jpg 2000w" sizes="auto, (max-width: 254px) 100vw, 254px" />
But of course, Dr. Langston isn’t satisfied with merely managing the symptoms of the disease; he’d like to cure it. Here, too, he is very optimistic saying what we are so much closer in understanding the underlying causes and pathways for the disease. We are seeing more and more the interrelationship between genetic and environmental factors in the disease, “this notion that your genetics loads the gun and the environment pulls the trigger,” said Dr. Langston.
But even in cases where genetics isn’t involved, genetics research provides great benefit, he said.
“It’s not at all unusual that a rare genetic form turns out to be hugely informative for the common sporadic form of the diseases – we’ve seen this with Alzheimer’s,” said Dr. Langston. “ Each of these new genetic variants, some of which are incredibly rare, have led us to a new protein and that protein leads us to a pathway and that pathway is obviously leading to cell death and Parkinson’s.”
Langston said many of these pathways intersect with mitochondria, the energy packet of cells, and offer giant clues for research into sporadic forms of Parkinson’s.
He sees great promise for what is being done in 23andMe’s Parkinson’s Research Community.
“That is the future, it really is,” he said. “You’ve got the questionnaires and the genetics. I mean most people with PD can tell you if they or someone in their family smoke, but they can’t tell you their genetics. Nobody can unless they’re signed up with 23andMe. Maybe someday everybody will know that, but we’re not there yet. That would be very transformative.”

A Leader in Parkinson’s Research

<img loading="lazy" decoding="async" class="aligncenter wp-image-12249 size-full" style="border: 1px solid #ccc;" title="PDgene" src="http://35.88.189.111/wp-content/uploads/2012/04/PDgene.png" alt="" width="770" height="700" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/PDgene.png 770w, https://blogcms.23andme.com/wp-content/uploads/2012/04/PDgene-300x273.png 300w, https://blogcms.23andme.com/wp-content/uploads/2012/04/PDgene-768x698.png 768w" sizes="auto, (max-width: 770px) 100vw, 770px" />
By Nick Eriksson
At 23andMe, we read a lot of papers so that we can bring our customers the latest information about their genetics. This is a tall task: there were nearly a million papers published in the biomedical and life sciences in the year 2011 alone. That’s why we’re appreciative when others wade through all of this data.
We’re particularly excited about a recent paper in PLoS Genetics &#8212; “<a href="http://www.plosgenetics.org/article/info%3Adoi%2F10.1371%2Fjournal.pgen.1002548">Comprehensive Research Synopsis and Systematic Meta-Analyses in Parkinson&#8217;s Disease Genetics: The PDGene Database</a>” &#8212; for several reasons. Not only is April Parkinson’s Disease Awareness Month but we’re proud to say that 23andMe contributed to this new <a href="http://www.pdgene.org">database</a> with the help of the many active participants in our Parkinson’s disease research community.
The authors of the paper looked at over 27,000 articles published on Parkinson’s disease, including over 800 genetic association studies of the disease (such as the <a href="http://www.plosgenetics.org/article/info%3Adoi%2F10.1371%2Fjournal.pgen.1002141">23andMe study</a> published last summer). They gathered data from over 3,000 different genetic polymorphisms from these studies in order to create the most comprehensive synopsis of Parkinson’s disease genetic research to date.
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<img loading="lazy" decoding="async" class="alignleft size-full wp-image-12163" style="margin-right: 10px;" title="small_23andMe_logo" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/JRBgdIBXKIeVIdETJrxYIw_ttam_logo.jpg" alt="" width="24" height="40" />
If you have Parkinson&#8217;s or know someone who does, <a href="https://www.23andme.com/pd">spread the word and get involved</a> in our groundbreaking research.
Don&#8217;t have Parkinson&#8217;s? You can still help by <a href="https://www.23andme.com/store">becoming a 23andMe customer</a> and filling out surveys!
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Scientists are trained to look for novelty. Thus, the task of summarizing other people’s work often can seem rather thankless. This paper, however, shows the importance of taking a second look at published data. The authors confirmed the associations between 11 genes and Parkinson’s disease that had previously been reported. Importantly, they also found a new genetic association near a gene called ITGA8, moving us another step closer in figuring out how genetics affects Parkinson’s disease risk.

Nick Eriksson

PDGene Enters the Scene for Parkinson’s Research

On his first Space Shuttle mission, Rich Clifford whispered a little prayer.
<img loading="lazy" decoding="async" class="aligncenter wp-image-12186 size-full" src="http://35.88.189.111/wp-content/uploads/2012/04/rich-portrait1.jpg" alt="" width="533" height="434" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/04/rich-portrait1.jpg 533w, https://blogcms.23andme.com/wp-content/uploads/2012/04/rich-portrait1-300x244.jpg 300w" sizes="auto, (max-width: 533px) 100vw, 533px" />“Please Lord let something go wrong so that I can fix it,” he recalls with a smile.
But on the launch pad, strapped into the Shuttle with its two massive solid rocket boosters primed for ignition, Rich had second thoughts.
“I said to myself: ‘Lord, scratch that earlier request.’”
Strange as his whispered prayer sounds now, it wasn’t so odd for an astronaut – someone with “The Right Stuff” – to want to be tested.
As a West Point cadet, then as an experimental test pilot, then as a Master Army Aviator and then as a NASA mission specialist, Rich spent his life facing huge challenges and overcoming them.
But for almost two decades, since the time just before his last mission into space, Rich has quietly faced the biggest challenge of his life: Parkinson’s disease.
His story and his fight against Parkinson’s is the subject of Zach Jankovic’s soon to be completed documentary, <a href="http://theastronautssecret.com/" target="_blank" rel="noopener noreferrer">“The Astronaut’s Secret.”</a>
On a recent visit to 23andMe, Rich said there’s a reason he’s been talking about that secret now. He has a message for others with Parkinson’s: “
“Don&#8217;t let it drive what you do. You are in charge of your future.”
Rich’s comments came earlier this year when he and Zach, as well as a small crew visited 23andMe to shoot some footage for the film and get a run down of some of the new research we’re doing.
They also sat down and spoke with our CEO Anne Wojcicki about the 23andMe’s Parkinson’s Research Community.
For Rich, 23andMe’s approach of using consumer-driven research is particularly appealing because it empowers people. It gives them a role in research, speeds the process of discovery and gives people back information about themselves. 23andMe created this novel approach to enlist people as partners in research, said Anne.
In the case of Parkinson’s our efforts have already yielded some promising results, she said. Last year we published a research paper detailing our <a href="https://www.23andme.com/about/press/sgk1/" target="_blank" rel="noopener noreferrer">discovery of two novel genetic associations</a> with Parkinson’s. And 23andMe also identified a <a href="https://www.23andme.com/about/press/sgk1/" target="_blank" rel="noopener noreferrer">genetic factor in a gene called SGK1 that may protect against the disease</a>.
We’ve partnered with <a href="http://www.scripps.edu/">The Scripps Research Institute</a> to further study the connection between SGK1 and a Parkinson’s to determine if indeed this variant is protective against the disease. What’s compelling about this finding, Anne said in the interview, is that it was made possible because we  found people in our database who have a high risk variant for Parkinson’s but never developed the disease. By comparing these people with those who did develop Parkinson’s our researchers were able to discover this potentially protective nature of SGK1. Beyond the potential of this discovery, Rich said he sees great promise in using genetic analysis to better diagnose Parkinson’s. The sooner a patient can be diagnosed the sooner they can start treatment and the better chance they’ll have at managing the disease. This is particularly relevant for Rich, who was fortunate enough get an early diagnosis, while with NASA. It didn’t stop him from flying on his third mission in 1996, where he made the first
The sooner a patient can be diagnosed the sooner they can start treatment and the better chance they’ll have at managing the disease. This is particularly relevant for Rich, who was fortunate enough get an early diagnosis, while with NASA. It didn’t stop him from flying on his third mission in 1996, where he made the first space walk in more than two decades with a fellow astronaut.  The diagnosis also didn’t stop him from spending 15 years working in a high profile job at Boeing after he left NASA and retired from the military. It was Zach’s dad, Dr. Joseph Jankovic, director of the Parkinson&#8217;s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, who first diagnosed Rich.
But Rich said even though he is optimistic about the work on Parkinson’s and hasn’t let the disease slow him down, it hasn’t been easy. The first hint he had of the disease was when he noticed that his arm didn’t swing in the normal way when he was walking. When he got the diagnosis he told his doctors, “OK so fix it.” He admits, that at first, he was in denial about the disease. But then, like with every other challenged he’s faced in his life, Rich met it
When he got the diagnosis he told his doctors, “OK so fix it.” He admits, that at first, he was in denial about the disease. But then, like with every other challenged he’s faced in his life, Rich met it head on. He wanted to continue his work with NASA and the doctors supported him, he said. Now he wants to share his story in the hopes of inspiring others with Parkinson’s to understand that a diagnosis doesn’t mean that they won’t be able to continue to go after their dreams.
But to do that people with Parkinson’s have to take charge, learn what they can about the disease, <a href="https://www.23andme.com/pd">participate in research</a> and not give up. One of the things that resonated with Rich about what 23andMe does is that it gives people the tools to do that. The work could also lead to early detection for people facing Parkinson&#8217;s, and the sooner someone knows they’re at risk the sooner they can do something about it.
“Knowledge is power,” he said.

Parkinson's Disease — Page 7