ARPKD 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 ARPKDChapter@pkdcure.org to find out how you can make a difference in the lives of 12.5 million people!

Chapter News

ARPKD Study Enrollees Needed

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

Chapter Meetings

Check back for upcoming meeting information.

Chapter Events

Thank you for all your hard work and dedication during walk season. This year, the ARPKD families raised more than $277,000. Together we raised more than $2.3 million. Although online fundraising for the 2010 walk is now closed, registration for this year’s walk opens in March. We look forward to another amazing success.

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.

ARPKD Families...Connected

For years now there are hundreds of walkers that come out on Walk for PKD day to honor the lives and memories of their loved ones with ARPKD. The 2009 Walk for PKD will be no different.

Last year the ARPKD Chapter was able to arrange a feature during registration for the Walk for PKD that allowed ARPKD families set up their teams in a “Division” – a way of connecting the ARPKD families across the world as one powerful group within the larger PKD community. Last year alone the PKD Foundation had 66 teams registered as “Walking for ARPKD” at over 34 walk events raising more than $202,000. Out of 32 teams recognized in the inaugural class of TeamFirst teams, 7 were ARPKD- designated teams.

Joining on a local level or hosting your own “Virtual Walk” under the “Walking for ARPKD” designation is a great way to connect locally and nationally with other families affected by PKD, including those with ARPKD. It allows you to be a part of a larger community serving the same goal…that no one suffers the full effects of PKD. And if there is a walk in your area to attend, it’s a fun and powerful way to do something positive to help support research, education and advocacy for PKD. If you have questions about how your family can join or how you can get support year round, please contact Michele Karl (914-522-6193) or arpkdchapter@pkdcure.org.