Connect with other ARPKD families.

Support Coordinators

Julia Roberts - Cell 404-731-8931; Home 404-636-9382; 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 almost 6 years ago. Gage, age 8, was on dialysis for 6 months and received a kidney from a family friend on March 27. Quinn is stable and 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; m3karl@optonline.net 
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.

ARPKD Chapter Meeting and Pizza Party

Held annually at the National Convention on PKD.  The 2009 meeting will be held in conjunction with the Chicago convention, although ARPKD topics will be featured at both the San Diego and Chicago location.

Join in a variety of fun events.

Learn More about ARPKD.

Stay informed with the ARPKD Chapter - sign up for our newsletter today.

The ARPKD Chapter is doing a fundraiser and we need your kid’s help!
 
We are going to do holiday cards (and possibly note cards if we get enough drawings that are generic) and printing them with greetings (or blank) and providing envelopes in packs of 12.

Here’s the scoop!
 
- We welcome kids under 12 - living with ARPKD and ADPKD - to submit artwork/drawings that can be scanned (flat). Artwork will be printed in full-color, so color away! We recommend colored markers over crayon – as they will reproduce better. But crayon drawings are welcome. Please use white 8.5 x 11 paper (no line rules). There is no limit on how many drawings you can submit!
- Be thinking seasonal pictures – Snowmen, Snowy Scenes, Christmas, Hanukah, Toys/Gifts/Stockings, as well as generic – cards that could be used for anything!
- We need permission to use a short 2-3 sentence about your child that we can print on the back. You do not need to use your child’s last name if you don’t want to. Here is an example,
Gage, born in 1999, was diagnosed with ARPKD when he was 3 and his sister was diagnosed at birth. When Gage was 7 he went on dialysis and later received a kidney from a family friend. Currently, he is thriving, and enjoying soccer, boy scouts, pizza (not allowed on dialysis!) and enough energy to tree climb endlessly! The PKD Foundation reserves the right to edit.
- Renderings need to be postmarked by the end of this month, August 31, 2008 and sent to: Tara Fitzgerald, PKD Foundation, 9221 Ward Parkway, Suite 400 , Kansas City , MO 64114-3367 . Do not fold, and mail in non-bendable packaging.
- Currently, we’re looking at having 8-12 different images to print on cards and to sell in packs of 12 card/blank envelopes. Selections on how many and what types of packages will be printed depend on what artwork is submitted. If one of your drawings is selected, you will be notified by the PKD Foundation this Fall.
- Selection of artwork is responsibility of PKD Foundation staff and marketing department and decisions are final. Artwork becomes the property of the PKD Foundation and cannot be returned.
- Pre-order dates and sales will be promoted on the PKD Foundation website as well as through Chapter Coordinators.

Thanks in advance for your participation! I know it’s early – but let’s break out some holiday music and get those cute kids coloring!

Make a difference in the lives of 12.5 million people.

Most walks are taking place the weekend of September 20th and 21st but check your city to see when your Walk for PKD is taking place. If there is not a walk in your city please look for the Virtual Walk.

The PKD Foundation has set up a new feature during registration to have your team listed as a "Walking for ARPKD" team. This is very exciting because now anyone who looks at the site can see which teams are ARPKD teams. 

Here is a step by step on how to register:
  1. Go to www.pkdcure.org
  2. Push the "Walk for PKD" button on the left of the screen
  3. Select a city by "clicking here" or go to the virtual page if there is not a walk in your city
  4. Click on your city
  5. Click on "Register now"
  6. Click on "Form a new team" on your right
  7. Type in your team name
  8. On the "division" button scroll down to "Walking for ARPKD"
  9. On the "Contact Information" page (2 pages past the division page) make sure for number 3 you pick "Yes-ARPKD"; that way your funds are restricted for ARPKD research

If you have already registered but didn't push the "Walking for ARPKD" button you can email either Leigh Reynolds at the Foundation at walkforpkd@pkdcure.org or email me directly at m3karl@optonline.net.