Bigger Than Our Bodies

Motorcycle Ride for PKS

Jeff — Tue, 02 Oct 2007 15:40:53 +0000

The PKS Kids folks held a Motorcycle Ride on Long Island last week to raise money and awareness about our kids with Pallister Killian Mosaic Syndrome. The article suggests that the PKS Support Group was result of PKS Kids, when the opposite is true. Starting a non-profit organization, however, was an important step in promoting our cause.

Jake’s World

Jeff — Wed, 25 Jul 2007 15:35:21 +0000

Nicole Zane has invited us all into Jake’s World, a website she created to celebrate the achievements of her son. There are photos, videos and a list of milestones showing Jake’s progress.

Second Annual PKS Family Reunion

Jeff — Wed, 21 Mar 2007 21:41:44 +0000

Last year, we attended what was most likely the first ever international Pallister Killian Mosaic Syndrome gathering, with around 15 families meeting to discuss life with PKS among ourselves and a small group of medical professionals.

Based on that resounding success, a second gathering has been planned for early August in Columbus Ohio. Visit the PKS Support Yahoo Group for more info!

A Work of Art

Jeff — Fri, 19 Jan 2007 23:56:12 +0000

Our children have been on many trips with us to help promote Mom’s artwork, but this father and son team has taken artistic collaboration to the next level.

Ben and his son Bennie’s creations, as well as Dad’s journal are available at benandbenniewaddell.blogspot.com

PKS In the News: England

Jeff — Mon, 23 Oct 2006 15:22:18 +0000

The Press reports today about a young child with PKS who was recently diagnosed with another rare condition: Kawasaki Syndrome.

From the article: “He spent the next few days being closely monitored in hospital, but has now recovered enough to come home and will be checked for heart complications in two weeks.”

PKS Kids Logo

Jeff — Tue, 10 Oct 2006 16:45:42 +0000

This weekend the PKS Board chose among the submitted logos, with this red and black design being the clear favorite among the 14 voters.

It’s a good design, and I’m sure once I learn to make the distinction between the recent non-profit and the larger PKS Support community, I’ll cause less trouble.