News and Information
Julia Roberts - Cell 404.731.8931; firstname.lastname@example.org
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; email@example.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.
Registration for fall Walks is now open. With more than 50 Walks across the country and the Virtual Walk, we can all unite to fight PKD.
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 the Fundraising Events Manager at the PKD Foundation (firstname.lastname@example.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
We had an amazing time at the Transplant Games of America! Thank you to everyone that stopped by our booth and shared your transplant story with us. Congratulations to everyone that participated in the games!
Local Events and 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 email@example.com.
Virtual Walk for PKD
Walk your way in your local community
For more information, click here!
May 19, 2014
Presented by Howard R. Winokuer, Ph.D.
Dealing with the reality of PKD is a very difficult situation. It is challenging to know how to talk to your children, even young adults, about PKD. As a result of attending this webinar, you will understand how to talk with your teen or young adult about PKD. Our presenter for this webinar is Howard R. Winokuer, Ph.D. Fran Towey, Jr., and his daughter Katie will also join us to share their story of being diagnosed with PKD as a teen.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.