Jared Hiner’s daughter, Kamden “Kammy” Hiner, was born with Wolf-Hirschhorn Syndrome and his life changed. The musician found himself actively involved in the 4p- (Wolf-Hirschhorn Syndrome) support group, and the support group was blessed with Kammy’s Kause.
Wolf-Hirschhorn syndrome is caused by the deletion of the distal short arm of chromosome 4. The disorder’s major features include a characteristic facial appearance, delayed growth and development, intellectual disability, and seizures. Because of this wide range of deleted material, the effect on our children varies widely. Some can walk, talk and assist in their daily care while others are not verbal and require constant care. Some are near normal height and weight while others at ages 20-30 weight only 35-50 lbs and are only 45-55 inches tall. The medical involvement also varies from near normal to severe heart and other problems.
Kammy’s Kause, founded in 2004, is the largest fundraiser in the United States for the 4p- Support Group, a 501(c)(3) not-for-profit organization. This summer, Kammy’s Kause is celebrating 12 years of restoring hope, raising awareness and funding a support group for parents with children living with 4p-. On August 28th and 29th, join IN the Loop, Jared Hiner, all of the parents at the annual event. A two-day music festival consisting of 22 regional bands, Kammy’s Ride which is a 100 mile escorted motorcycle ride, huge Kid Zone that has everything from large bounce houses to a petting zoo, an extremely popular AuKtion, great food, amazing people and much, much more!
In 2008 money raised from Kammy’s Kause was solely responsible for bringing specialists and doctors from five different countries to our bi-annual national conference in Washington DC. This was the first time any of these doctors have been together at the same place to share information from their own research! In the past Kammy’s Kause has helped several families attend the biannual 4p- National Conference, which is held in different locations across the United States.
If you missed the segment on IN the Loop previewing Kammy’s Kause check out the video below. And don’t forget to watch me, Jade Johnson, every Sunday night at 11:30 on WISH-TV 8. Keeping you IN the Loop of everything that is Indianapolis.