PKD Parents ChapterConnect. Support. Educate.

The PKD Parents Chapter, led by volunteers Julia Roberts and Michele Karl, has served more than 500 families since 2000. Once a family with a child living with PKD reaches out to the PKD Foundation, a volunteer from the PKD Parents Chapter contacts them for support,compassion and guidance. Families can be connected with experts and other local families,and are supported in many ways through the Chapter. Parents of children with ARPKD or ADPKD should email to connect with the PKD Parents Chapter.


 News and Information News and Information

Support Coordinators

Julia Roberts - Cell 404.731.8931;
Atlanta, GA - Julia's two children, Gage and Quinn have ARPKD and a vision disorder called Ocularmotor Apraxia. They were diagnosed when Quinn was born in 2001. Gage, born in 1999, was on dialysis for 6 months and received a kidney from a family friend in March 2007. Another family friend donated to Quinn on her 8th birthday in September 2009. Both kids are thriving despite their diagnosis. Their journal is being chronicled at

Michele Karl - Cell 914.522.6193; home 914.948.4495;
White Plains, NY - Michele has three sons: Max is 8, Nate is 5, and Gabriel is 2. Max and Gabe have ARPKD. They were diagnosed in 2006 when Gabe was born at 34 weeks gestation. Subsequently Max was diagnosed but did not have any symptoms at the time. Nate who is now 5 does not have ARPKD. Both boys currently are being treated for high blood pressure, but have good kidney function. Michele recently started a blog at

PKD Parents Memorial Quilt 

The PKD Parents Chapter started an initiative in 2014 to recognize and honor the memory of all children lost to PKD by creating a memorial quilt. We will send out quilt squares upon request for those who have lost a child. For families that have events for fundraising and awareness, we will send the quilt to you (as event schedule permits) to use and return or send to the next family/event.  

Creating a Quilt Square
If you would like to create a quilt square please send the following information:

    • Your name
    • Your address
    • The full name of your child
    • Their birth-passed date/s
    • Picture if you're willing to share
    • Are you okay with us publicizing your child's name on a memorial page online?
    • You may provide an 8.5x11 sheet of your and your child's story by email or return of the square for us to put in a book to travel with the quilt and anything about the square you are producing. 

You will receive a square in the mail that may be decorated by sewing, embroidering, and/or painting with fabric paint or markers. There is no set date to get the squares back to us, please take the time you need. 

Requesting the Quilt for an Event

The first quilt has been completed. If you are interested in displaying this quilt at an upcoming event, please complete this request form.

If you have lost a child to PKD, we hope you will let us help you honor them in this special way.

Thinking of you always,

Michele Karl and Julia Roberts
PKD Parents Chapter Co-Coordinators


Virtual Walk for PKD


Walk for PKD

   Walk your way in your local community

            For more information, click here!

   The fall Virtual Walk will be open through Dec. 31

               Register Today!


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Calendar Local Events and Meetings

Meeting Chapter Meetings

Chapter meetings are another opportunity for you to have your questions and concerns about PKD addressed. We will do our best to provide you with answers or direct you to someone that can assist you. 

Although the  PKD Parents Chapter does not have any meetings planned at this time, we would still love to hear from you! If you have any questions concerning support meetings, please email our Volunteer Chapter Coordinators at

Check back for updates!

Virtual Walk for PKD

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Walk your way in your local community

For more information, click here!

Register Today

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Resources Resources

Sign Up to Receive Information From Your Chapter

Next Webinar Wednesday

Webinar Wednesdays with CSO David Baron, Ph.D.Genetics of PKD

Wednesday, Nov. 18, 12 - 1 p.m. CDT

PKD Foundation Chief Scientific Officer David Baron, Ph.D., will explain the genetics of ADPKD and ARPKD. He will include a overview of some of the genetic research currently being conducted.


Next Free National Webinar

Dr. David BaronThe sequence of drug development

Wednesday, Dec. 2, 2015, 7 to 8 p.m. CST

Presented by: David Baron, Ph.D., PKD Foundation CSO

Why does a drug therapy take so long to find? Hear from PKD Foundation Chief Scientific Officer David Baron, Ph.D. as he uses his decades of experience in drug development to explain the process as it relates to PKD. Also included will be a discussion of clinical trials – why they are important and how to find out about them.

Register now

Watch previous webinars here.


PKD Connection

Discussion Forums

PKD Discussion ForumsPKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.

Join the Conversation

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Your Organization

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©2015, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2015, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.