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.
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 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.
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
PKD Foundation News and Announcements
We are excited to announce our new Chief Scientific Officer (CSO), who will be joining the PKD Foundation on Feb. 9. David Baron, Ph.D., will be leading the Foundation's work in research toward finding treatments and a cure. Baron's background in biomedical sciences and drug development will keep us moving forward with progress in research.
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 firstname.lastname@example.org.
Virtual Walk for PKD
Walk your way in your local community
For more information, click here!
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Latest Free Webinar
Presented by Clifford Miles, M.D., UNOS Kidney Transplantation Committee Region 8 Representative; Assistant Professor of Internal Medicine; Transplant Nephrologist, University of Nebraska Medical Center
On Dec. 4, 2014, the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) implemented a new system for allocating deceased donor kidneys to those on the transplant waiting list. Questions have come in asking how the new Kidney Allocation System (KAS) will affect PKD patients. Join us for a conversation with Dr. Clifford Miles, UNOS Kidney Transplantation Committee Region 8 representative, where he answers your questions, both pre-submitted and submitted in real time, during the webinar.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.