PKD Parents Chapter
Welcome to the PKD Foundation’s PKD Parents Chapter Website!
Julia Roberts - Cell 404-731-8931; email@example.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; firstname.lastname@example.org
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.
Better Together at the PKD National Convention
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
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!
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 email@example.com.
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