Parkinson’s Awareness Month

April is Parkinson’s Awareness Month and this year it also marks the eighth anniversary of 23andMe’s Parkinson’s Research Community,
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which introduced a game-changing model for science, one that leverages online tools and is powered by average, everyday people — people like you.

Parkinson’s Awareness Month also comes on the heels of an FDA authorization for 23andMe to offer several Genetic Health Risk Reports to customers, including one on genetic risk for Parkinson’s Disease. Genetics is one of many factors that influence a person’s chance for developing Parkinson’s disease. 23andMe’s new Parkinson’s Disease Genetic Health Risk Report looks at two of the most common variants associated with significantly higher risk for the disease LRRK2 G2019S, and GBA N370S.

Putting this information into the hands of individuals is important for them personally, but it can do so much more. It can trigger the sort of engagement that powers important research as 23andMe has seen with the Parkinson’s Research Community, which now includes more than 11,000 people and is the world’s largest study cohort of genotyped individuals with Parkinson’s.

The community has powered important research from the beginning, first helping to replicate known genetic associations for Parkinson’s and then leading researchers to find never before known associations. Beyond that work 23andMe has also joined in hugely important ongoing collaborations — with organizations like the Michael J. Fox Foundation — which are helping lead to important insights and valuable data for future research.

Right now 23andMe is working on a new research effort with The Michael J. Fox Foundation (MJFF), and we expect to announce more details about the program later this year. In the meantime, we strongly encourage people interested in supporting or participating in Parkinson’s research to learn more about the MJFF’s Fox Insight program.

For people with Parkinson’s or those who love them, the research done through the 23andMe Parkinson’s Research Community and its collaborators offers something else — a chance to make a difference. This is a true human desire. Not all of us have the resources or skills to do the science, but we all have the ability to offer what may be even more valuable, our interest and participation. As Thelma, the wife of one of our research participants, told us a few years ago, participating in research offered her a chance to make a difference.

“I have six grandchildren … and I don’t want (Parkinson’s) to befall them,” she said. “This is something I can do for them as well.”

Engaging people like Thelma is part of what 23andMe does well, but we offer something else too.

Even individuals who do not have a specific condition, who are healthy and are not personally touched by some of the health conditions we study, can help by simply consenting to research. Having aggregated data from healthy individuals for which to compare is important for disease research. In addition, some individuals who remain healthy their whole lives, even though they have the variants that put them at a higher risk, could also offer researchers valuable information in their study of Parkinson’s and other neurodegenerative diseases. In fact, some scientists are starting to hypothesize that developing interventions before someone is symptomatic could be key to prevention or more effective treatment for some neurodegenerative diseases. One powerful way to study this hypothesis is to identify people with specific risk factors – like genetics – to focus on in future studies.

The ability for people to participate in research and become engaged in this kind of work is game changing, said 23andMe co-founder and CEO Anne Wojcicki.

“What gets me up every day is the excitement of our potential for research and the opportunity to advance science and understanding of the underlying biology of conditions like Parkinson’s disease,” she said.  

Parkinson's Research Community

  • Sonia Fisher

    My grandma had Parkinson’s disease, she is about 80 years old it was detected 7 years ago. it was getting more difficult to live for her, because of stiff muscles she can’t even move. L-dopa and carbidopa medicines are given, but won”t give much relief. She can”t eat food and the skin is damaging forming ganglia. This is may be the last stage of disease.. nothing was really working to help her condition. Finally she started on parkinson’s herbal formula i purchased from Health Herbal Clinic, i read alot of positive reviews from other patients who used the parkinson’s herbal treatment. she used the herbal remedy for 7 weeks, its effects on parkinson’s is amazing, all her symptoms gradually faded away, she feed very more freely by herself now! (Visit www. healthherbalclinic. weebly. com or email at healthherbalclinic@ gmail. com) I recommend this Parkinson’s herbal formula for all Parkinson’s Patients.

  • Annnnd….how can we take part in this study???

    • 23blog

      Hi Lori,
      23andMe will invite customers to participate in the pain study.

      • Mark Perino

        Can you repost here with how to join once it is ready? We’d really like to participate. We have 2 siblings one of which has chronic pain. Both are sequenced on 23andme.

        • 23blog

          Hi Mark,
          We will be emailing existing customers who have opted into research about how they can participate in the research, and the outreach will be specific to those with chronic pain.

  • Sue Nielsen

    I definitely need to be a part of this study. I’m a physician and I have dealt with chronic pain for over 25 years and recently found out I have the MTHFR GENE. IF You have chronic pain, fibromyalgia, headaches, depression, insomnia or any pain issue – look into this. I was also Vit D deficient for years which also contributed. You have to be your own health care advocate !!!!!!

  • Lori Collins

    I wish that I could be part of their study. I have been living with chronic pain for 27 years. I have Blastomycosis of the Spine and live each day in pain. My pain meds help a little, at least its tolerable.

    • 23blog

      Hi Lori,
      I’m sorry to hear about your issues with pain. The study will be open to eligible 23andMe Customers.

  • Heather Heart Birnie

    I’m glad I could be part of the study!!!

  • Nancy

    How do we enroll in the study? Have had chronic pain all of my life.

    • 23blog

      Hi Nancy,
      We will be contacting eligible customers to enroll in the coming weeks.

  • Dawn Fox

    Have lupus and fibromyalgia and a disk in my back that is eroding away. Have pain pretty much every day. Can’t wait to help out in the study.

  • surfingranny35

    I have had enough real pain in my life time, there is no way I want to take part in this study, not even putting my hand in ice water. I got so cold at work at times, I had to get into a tub of hot water when I got home to thaw out. You younger people have a go, NOT I!

  • Yolanda Castillo

    I have suffered from chronic pain the majority of my life and have battled depression since I was a child. How can I participate in this study?

    • 23blog

      Hi Yolanda,
      If you are a customer and have consented to research, you may be invited to participate via email.

      • Yolanda Castillo

        I have lived with pain since I was a child. It was always attributed to “growing pains”, but they never stopped. The pain was mostly in my lower extremities. Around age 6, I developed severe migraines especially when my mother wore a certain perfume. I was diagnosed with patellofemoral chondromalacia to my left knee. Then I was diagnosed with degenerative disc disease to the majority of my spine. I had 3 level cervical fusion and need more surgery to lumbar spine, and a thoracic disc bulge which I was told very few surgeons would attempt surgical intervention. One MRI shows I have a sacromenigocele at S4 level that also causes pain between 5-8 when I sit a certain way. I also have arthritis, fibromyalgia, and have inconclusive lab results in reference to connective tissue disease. I would like to participate in this study because I do feel genetics is a big part of my chronic pain. My mother is adopted so I have no health information on her family. It would give me great satisfaction to be a part of this research if findings will help others suffering with chronic pain.

  • Suzanne Morris

    They are asking for volunteers, but they are no links to connect you to the research team. I’d take part if I was suitable. I have a long term health condition that leaves me some level of pain most of the time.

  • Christine Swiencki

    I would like to be part of this study. I have Lupus, migraines, fibromyalgia and my rheumatologist thinks I may have Raynaud Syndrome, I need to have carpal tunnel surgery before he will officially diagnose me with Raynaud. I also have arthritis & bone spurs in my right patella. I am both vitamin D and B deficient and can not take pain medication, it makes me sick and does not alleviate pain.

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