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.

Kammy's Walk

For the past five years we have had a benefit called "Kammy's Kause" to help raise awareness and money for 4p-. With all the support from our friends and family "Kammy's Kause" has been a great success. With your help we have decided to have the first annual "Kammy's Walk", a fundraiser for "Kammy's Kause". For those of you who are unaware of what "Kammy's Kause" is, it is a festival we put on to help raise money that goes directly to the 4p- Support Group, www.4p-supportgroup.org, to help fund the program and help other families that have a 4p- child. With only 600 +/- cases known of in the world and around only 150 in the United States research is pretty limited for this rare disorder.Interests:We will need all of the help and support that you have shown for "Kammy's Kause" for "Kammy's Walk". Tara Hoegh and Aleah Wade are leading, what I am referring to as "THE STREET TEAM", to raise awareness for this fundraiser.

If you would like to volunteer or have any thoughts or ideas please contact:

Kammy's Kause

Kammy's Kause (August 28th & 29th, 2009) is a music festival dedicated to raising money and awareness for the rare chromosome disorder 4p-. A free 2-day music festival featuring some of the best bands Indianapolis, Chicago & Louisville have to offer. Located 1 exit north of the Verizon Wireless (Deer Creek) exit on I-69, it's the American Legion Campground just outside of Fortville, IN. Kamdyn (Kammy) Hiner is the daughter of Jared Hiner (Original State of Mind) and the reason behind the creation of the festival. She was diagnosed with 4p-, Wolf-Hirschhorn Syndrome, in January of 2002. With only 600 +/- cases known of in the world and around only 150 in the United States research is pretty limited for this rare disorder. So we put on this festival to help raise money that goes directly to the 4p- Support Group , www.4p-supportgroup.org , to help fund the program and help other families that have a 4p- child. Lauren's (one of Kammy's friends that has 4p-) dad's company has promised to match any amount we raise up to $10,000 !!!!! We'd greatly appreciate your help and support, and in return be entertained by some of the best bands this area has to offer. Such as,

The Bands: