23andMe’s Parkinson’s Community is Almost There

23andMe’s Emily Drabant, PhD, speaking at a Parkinson’s event in Iowa.

23andMe is tantalizingly close to reaching the goal of enrolling 10,000 patients in our Parkinson’s research community.

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 Parkinson’s community, will speak at the Cleveland Clinic’s Lou Ruvo Center for Brain Health 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.

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 two new genetic associations 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, the Scripps Research Institute 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.

Participate in research!

As a member of 23andMe, you can participate in research simply by taking surveys. If you have Parkinson’s disease or know someone who does, learn more about joining our Parkinson’s Disease initiative!

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 Michael J. Fox Foundation, the Parkinson’s Institute, the National Parkinson Foundation, the Parkinson’s Association of San Diego, the Cure Parkinson’s Trust and Parkinson’s UK.

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


  • Stephen Holzel

    It would be helpful if one could easily print a sheet of paper to pass on to a potentially new member. The sheet should be large print and a simple message, who to call or write.
    Thanks

    Stephen.

  • Laura Henze Russell

    The other elephants that needs to be in the room to solve the keys to Parkinson’s Disease and many other chronic diseases – in additions to genes – are toxins, dentistry, and biocompatibility.

    In the United States, 23andMe is raising awareness and broadening access to information about genes. That is fabulous. Hidden River Health Challenge: A Social Innovation Enterprise, is raising awareness and plans to broaden access to information about the toxins within us.

    While science and technology and knowledge expands at the speed of light, regulations to protect us better in the light of new information about risks of heavy metals, toxins and biotoxins in light of gene variants and glitches has not kept pace.

    Goverrnment regulations, and regulators, tend to get stuck, and evolve to become protectors of the very industries they were designed to watchdog, at the expense of people and health.

    The FDA is the poster child for this in its actions on 23andMe, and on mercury dental amalgam, where it refuses to follow the recommendations of its own Scientific Advisory Panels that recommend warnings, contraindications and written informed consent for its use. Meanwhile, other nations ban it outright, or increasingly restrict its use. We lack the most basic medical, human and consumer rights courtesy of the FDA.

    This is not the only toxin, or the only factor in PD. Toxins are legion. But amalgam is a major factor for some, as a number of people have recovered in whole or part by addressing it.

    It is time to reboot the sector and bring the elephants into the room if we want to get healthier, enjoy life, and spend less money on health care, sick care, chronic disease management, and long term care.

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