Hi, my name is Jim Shellenberger and my daughter Karly has WHS. Karly was born in 2005 and was diagnosed in January of 2007 (age 14 months). My wife Jennifer and I also have a son (Ethan, born in 2001) and live in Mechanicsburg, PA. We are very active and love to spend time with family and friends. There is hardly a week or weekend that goes by when we are not doing something! When Karly was diagnosed with WHS, we made the decision that her syndrome was not going to stop her (or us) from enjoying and experiencing life, and that WHS would never be the reason we couldn’t do something. She is included in everything we do and truly loves every minute of it! A few of our favorite things to do as a family are attending Penn State football games, vacationing in the Outer Banks of North Carolina, traveling to new places, attending local baseball and hockey games, swimming, and spending time outdoors. Karly does not have all the “textbook” characteristics of WHS and certainly has her share of uniqueness and challenges….but she has shown unbelievable courage, resolve, and progress during her short life. She is our hero. I was first elected to the Board in 2008 as Secretary and recently elected Treasurer in 2010. We are looking forward to hosting the 2014 national gathering in PA! I love being part of this network of families that “get it” and look forward to bringing additional awareness of WHS through our group.