PKD Parents Chapter

With the help of PKD Foundation Chapters in cities across the country and beyond, the PKD Foundation provides a forum for patients who want to join in the fight to find a treatment and cure for PKD. There are jobs for everyone, big and small. Just contact us at pkdparents@pkdcure.org to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.

PKD FoundationPKD Parents Chapter

 

 

Chapter Info Chapter Info

Recent News Recent News

Meetings Meetings

Local Events Local Events

Media Media


Chapter Info Chapter Info

Welcome to the PKD Foundation’s PKD Parents Chapter Website!


Support Coordinators

Julia Roberts - Cell 404-731-8931; julia@robertsresource.com
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 http://www.kidneysandeyes.com.

Michele Karl - Cell 914-522-6193; home 914-948-4495; michelehopekarl@gmail.com
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 http://threepeas.wordpress.com.

 


 

Outstanding Patient Support Award

Presented to the Chapter that provides
outstanding support for those affected by PKD.

2013-chapter

 


Recent News Recent News

 

Better Together at the PKD National ConventionPKD National Convention: Better Together

 June 20–22, 2014

Kansas City, Mo.

This June, the PKD community will unite in Kansas City for three days of relationship building, education and fun. Join us as we hear from experts in the field, including Gregory G. Germino, M.D. of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health and leading ARPKD expert Lisa Guay-Woodford, M.D. Whether you are a PKD patient, caregiver or family member we know you will walk away from the Convention with new connections, friends and practical tips for managing your health or supporting a loved one.

 Visit pkdcure.org/convention to register and learn more.

 


ARPKD Study Enrollees Needed
 

Please click here for more information on the study and how to enroll

Transplant Games of America

 

Transplant Games of America

Houston, Texas
July 11 - 15, 2014

The Transplant Games of America is a multi-sport festival event for individuals that have undergone life-saving transplant surgeries.  The games are more than an athletic event!  They highlight the importance of organ donation and celebrate the lives of organ donors and recipients.  For more information about the 2014 Transplant Games of America and to register to participate, visit www.transplantgamesofamerica.org.

The PKD Foundation plans to attend the 2014 games to celebrate with PKD patients that have received a kidney transplant, living kidney donors and their families.  If you plan to participate, please take our brief survey! 

Take Our Survey

 


Meetings Meetings

The PKD Parents Chapter does not have any meetings scheduled at this time but we do want to hear from you.  If you would like to connect with our Volunteer Chapter Coordinators, please email us at pkdparents@pkdcure.org

 


Local Events Local Events

 

 

The PKD Parents Memorial Quilt

The PKD Parents Chapter is starting 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.  

 If you would like to participate in this unique initiative please…

Send Julia@RobertsResource.com 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. 
  • We will send out the squares you may decorate by sewing, embroidering, and painting with fabric paint or markers. There is no set date to get the squares back to us, please take the time you need. We will start the quilt when we have enough squares and we will hold on to squares to add to the quilt as time permits. In the event the quilt becomes too large to send and use at events easily, we'll create a second quilt. 
  • When the quilt is completed, please contact Sara Brown, Fundraising Events Manager at the PKD Foundation (Sarab@pkdcure.org), to request the quilt be sent to you for your event.  

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



 

Media Media

Latest Webinar

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WebinarStraight Talk - Patients Share Their Unique Experiences with Dialysis and Transplantation

March 27, 2014
Presented by PKD Patients

Do you have questions about renal replacement? Is your physician telling you it is time to prepare for dialysis or transplant? If you answer yes to these questions, our latest webinar will help you be your best advocate as you enter the conversation about renal replacement with your health care team.

 

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Contact Us

Volunteer Chapter Coordinators
Julia Roberts & Michele Karl
pkdparents@pkdcure.org
Call 1-800-PKD-CURE

 

Your Organization

2000 Daniel Island Drive, Charleston SC 29492
Phone: 800.443.9441 | Fax: 843.216.6100
info@yourdomain.org

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.
National Headquarters: 8330 Ward Parkway, Suite 510, Kansas City, MO 64114. Phone: 1.800.PKD.CURE
©2014 PKD Foundation. Privacy Policy | Terms & Conditions

Founded in 1982, our vision is that one day,
no one will suffer the full effects of polycystic kidney disease.


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