PKD Connection Blog


Who do you know with PKD?

To those in the PKD community, we’re aware of how the disease affects our friends and families. For this PKD Awareness Day, it’s important for those unaffected by the disease to understand that PKD is closer than you think. To get ready for the day-of, our Chief Engagement Officer, Shane Adams, breaks down degrees of separation and how you can help spread awareness Monday, September 4:

You know that game, Six Degrees of Kevin Bacon? If you don’t, the premise is this: name any actor in any movie ever and they can be connected to Kevin Bacon in six movies or less.

Example: John Boyega, aka Finn from Star Wars: The Force Awakens

John Boyega was in Star Wars: The Force Awakens with Oscar Isaac
Oscar Isaac was in Inside Llewyn Davis with John Goodman
John Goodman was in The Big Lebowski with Julianne Moore, who…

…was in Crazy. Stupid. Love. with Mr. Kevin Bacon.

Four degrees.

The game works because there are only a limited number of movies and actors and Kevin Bacon has been in, well, a lot of them.

That game got me thinking: how many degrees away am I from someone with PKD?

Obviously, the Foundation is extremely connected to the patient community so it wouldn’t be more than 1 degree for those of us in Kansas City, but what about for the average American?

Well, let’s consider that the average American has 150 friends or acquaintances. By most accounts that is a pretty conservative number (especially if you check the number of friends most people have on Facebook). If we assume that there are approximately 600,000 people in the United States living with PKD and those 600,000 people have 150 friends and those friends have 150 friends, we get to the entire population of the United States pretty quick.

In fact, by our calculations, the majority of the American population is about 1.2 degrees away from someone with PKD.

That means, if you don’t know someone with PKD, you know someone who knows someone.

As we approach this year’s PKD Awareness Day, it’s a powerful message to share just how closely we are connected to those affected by this debilitating disease. We will be providing our local Chapters and volunteers with toolkits for PKD Awareness Day. Keep your eyes on our Facebook page for more information. Also, be sure to sign up for email alerts to be among the first to know how your participation can help raise awareness.

Awareness is the best tool in our arsenal to continue advancing research as a cause. As more and more people become informed, we gain advocates and amplifiers for the stories of those living with PKD.

Kevin Bacon once said this about the “six degrees” game:

“If you take me out of it, I find ‘six degrees’ to be a beautiful concept that we should try to live by. It’s about compassion and responsibility for everyone on the planet.”

Let’s take that beautiful concept and use it to raise awareness for our community. The more connected we feel to each other, the more we can help share our stories of PKD with those around us and hopefully, that will lead to more compassion, awareness, and positive outcomes. We hope you’ll join us on September 4 for PKD Awareness Day.



  1. I would like to start a “Grandparents against PKD” blog. Is it possible?

    Elena Ventresca

  2. Megan Lubis says:

    Hi Elena, We are happy to help. If you want to share blog content, please send us an email and we can get connected!

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