Connor Joe Preitauer, 10 years old and a 4th grader, is the son of Billy Preitauer and Heather Axtell. Connor has a rare disease known as Bardet Biedl Syndrome or BBS. While we knew that things weren’t quite right shortly after Connor was born, discovering exactly what was going on took many years and too many doctors to count. It was not until January, 2015, when Connor was seven that we finally received a diagnosis. It was a huge relief to finally have a name, but it was also heartbreaking.
Bardet Biedl Syndrome is a rare genetic disorder caused by a defect in the way that cells communicate with each other. There are about 3000 people in the United States with BBS. While there is a lot of variation in the exact symptoms and severity of BBS, people with the syndrome typically have kidney and/or liver issues, metabolic problems leading to obesity, low muscle tone, and lose most of their vision before they are 20.
Despite all this, Connor is a kind soul and full of life. He has a unique sense of humor and often uses "catch phases" to get a laugh. He has a contagious laugh and everyone loves him instantly. We desperately want to help Connor, but currently there are no treatments for BBS or its symptoms. Over the last 20 years, though, huge progress has been made in research on the syndrome. For the first time, a treatment for one of the symptoms—excessive weight gain—is being tested this year.
We want that progress to continue, for Connor and for other kids with BBS. That takes money. Money for research that will lead to better health for Connor and, one day, a cure. My uncle, John Eckhardt, once told me that if you ever need to raise some money, get a bunch of bikers together. So that’s what we’re doing.
Join us for Cruising for Connor, the first annual Poker Run to fight Bardet Biedl Syndrome. All proceeds will go to the Bardet Bield Syndrome Foundation which helps fund the research that will make a difference for Connor.
Poker Run
Brady, Nebraska
July 14, 2018
Starting Point: Hitchin’ Post, 110 S. Main St. Brady, NE
Kick stands up at 11 am
Route details to follow. Camping and shuttle service available.
Last stop back at Hitchin’ Post, with a hog roast and a live band.
