Hello and welcome to kammyskause.org

June 28, 2010 by Jared

Hello -
My name is Jared Hiner and I am writing to you this year asking for your help. My daughter is Kamdyn Ann-Faith. She was born December of 2001 with a chromosome abnormality called 4p-/Wolf Hirschhorn. There are about 600+/- known cases in the world, so very little is known about this syndrome. I, my family and my band, Breakdown Kings, are presenting and hosting our 7th Annual Music Benefit on August 27th-28th, 2010 at the American Legion Park just north of Fortville, Indiana on Highway 13. (one exit north of Verizon Wireless Music Center on I-69) It is called "Kammy's Kause". This festival begins Friday evening at 6pm and runs through Saturday night. Donations are accepted. We have had over 40 Midwest bands/singers that have donated their time and talents to this worthy event over the past 6 years. We have had great turnouts the previous 6 years with every year getting bigger! We are seeking sponsorship and donations in order to keep this event free to the public. We rent out the park and reserve the campgrounds for those who wish to camp. Our goal is to raise awareness about this syndrome, help with research, and assist families of children with 4p-. The money we raised last 6 years has helped over 25 families attend the bi-annual National Conferences for 4p-. There they received encouragement from other families of 4p- children and medical information from 4p- specialists in the medical field who attend these conferences. Kammy's Kause has been featured the last 6 years in the Greenfield Daily Reporter, Indianapolis Star, Nuvo Magazine, Intake magazine, IndyMusic.net, Jambase.com, IMN.net, Channel 13, & Fox 59 and is sponsored by 92.3 WTTS.

Kammy's Kause Contact: Aleah Wade 1-317-362-3997

Realize that true happiness lies within you. Waste no time and effort searching for peace and contentment and joy in the world outside. Remember that there is no happiness in having or in getting, but only in giving. Reach out. Share. Smile. Hug. Happiness is a perfume you cannot pour on others without getting a few drops on yourself.

- Og Mandino

Kammy's Ride 2010

The 2nd Annual Kammy's Ride will take place on August 28th (Saturday of Kammy's Kause) The ride will cover 150 miles of beautiful North-East Indiana. The starting location is still being finalized and we will post that information as soon as it is locked in. Registration time (breakfast and coffee) on Saturday August 28th is 9am-10am. Kickstands up at 10am sharp and then the journey begins. The ride will end at Kammy's Kause (American Legion Campground, Fortville,IN) at approximately 3:30pm. There will be a hog roast and beverages supplied for all the riders as well as group photo that will be taken with all the 4p- kiddos that are in attendance. Once you are at Kammy's Kause we want you to feel free to kick up your feet, grab a drink and enjoy some of the best live music that Indiana has to offer. Your continued support has meant so much to the entire 4p- Support Group. Please register on-line @ www.kammyskause.org as soon as possible so that we can get an idea on how much food, t-shirts and other merchandise we are needing to supply. Thank you all again for your support and we look forward to seeing you very soon.

Kammy's Ride Contact: Forry & Kelly Plank 1-317-498-1018

What Is Chromosome 4p- Syndrome?

Chromosome 4p- syndrome or Wolf-Hirschhorn syndrome, is a chromosome disorder due to partial deletion of the short (p) arm of chromosome 4. It is, therefore, also called the 4p- syndrome. Features of the syndrome include midline defects with a scalp defect, widespaced eyes, broad or beaked nose, oral facial clefts (cleft lip/palate); low simple ears with a dimple in front of the ear; small &/or asymmetrical head; heart defects; and seizures (that tends to diminish with age). There is severe to profound developmental and mental retardation. Some patients do learn to walk with or without support and some achieve sphincter control (by day). There is usually very slow progress in development. Most (nearly 90% of the cases of the syndrome are due to de novo (newly occurring) partial deletions of the short (p) arm of chromosome 4. In the remaining 10% or so of cases, one of the parents has a balanced chromosome rearrangement involving chromosome 4p from which the child's 4p- is derived. Parents of 4p- children should therefore have chromosomes studies themselves. The syndrome is named for the American Kurt Hirschhorn and German U. Wolf who independently found the 4p- chromosome abnormality in the 1960s.