People Powered Research at 23andMe

Thelma-Jim1There are a lot of reasons why Thelma Ackley signed up for 23andMe – she’s fascinated by her ancestry and she’s curious about her health – but the main reason is her husband and her six grandchildren.

A few years ago her husband Jim, a former engineer, developed Parkinson’s disease. The neurodegenerative disease is slowly taking away his control over his muscles. It makes it harder for him to walk and do the kind of handyman work he so enjoyed.

He’s still able to do a lot and is spry and happy, but for the things he can’t do, Thelma now is there. She keeps Jim as active as possible. The couple walk together up to a mile a day, and Thelma makes sure Jim does regular physical therapy.

“I want to keep him around for as long as I can,” she said.

But of all the things she has done for Jim, the easiest was signing up for 23andMe and consenting to research. Although 23andMe has research communities where patients with conditions like Parkinson’s Disease, Sarcoma and MPN can join for free, any 23andMe customer can participate and help out simply by consenting to research when they enroll.


“We’ve conquered so many diseases like Polio and all it takes is people working hard on it and one thing I can do to help is this,” she said.

That doesn’t mean we’re going to cure Parkinson’s overnight, but participating in research may help scientists find the causes and treatments for the disease. Thelma said she doesn’t know why someone wouldn’t participate.

“I have six grandchildren from ages 21 to 30 and I don’t want this to befall them,” she said. “This is something I can do for them as well.”

  • Stephen Upham

    My wife and I recently received a couple kits. My wife developed neurological symptoms in her 40’s and was diagnosed with Hereditary Spastic Paraplegia. It is rare chronic disease and travels in family’s. Her older brother got it and her older sister did not. We have not been able to find much about it. Do you know if there is any research being done on this and would she benefit by sharing her information online. She went from cane to walker to wheelchair. We are interested in learning more about this debilitating disease.

    PS. She worked on Staff at Stanford for 10 years and her older brother did graduate work there.

    • ScottH

      Stephen, Thank you for your comments and our sympathies about your wife’s condition. 23andMe is not currently doing research in this area. There is a Spastic Paraplegia Foundation, which would probably be a pretty good place to look for any information about research initiatives. In looking at the SNPs associated with the condition, and there are quite a few, most of them are not on our chip.

  • kathie randall

    I am 60 yrs old with RA. I read you do research with RA patients, and want to know how I go about being a part of our research.

    • ScottH

      We are doing research with Janssen Healthcare Innovation, a unit of Janssen Research & Development, LLC, and (a subsidiary of Quintiles), but we are not recruiting patients for the study currently. Here’s a post about the study.