Congenital Central Hypoventilation Syndrome, CCHS, is a complex genetic disorder that is typically diagnosed at birth without prior warning. It affects the autonomic nervous system, most dramatically the ability to breathe involuntarily during sleep, along with many other multi-system complications. There are only about ~1200 individuals worldwide with CCHS. CCHS, is considered an “orphan disease” with little funding and research attention. Over the past several years, we have witnessed additional cuts in NIH grants and similar resources for those researchers with an interest in our field. The CCHS Family Network (www.cchsnetwork.org) has chosen to address this issue with the establishment of The CCHS Foundation (CCHSF). The CCHSF is designed to raise funds in support of three important missions:
1. CCHS Research - Seventy percent (70%) of all raised monies will be used to fund research grants distributed by the CCHS Family Network Research Advisory Board (RAB).
2. Education & Outreach - Twenty percent (20%) of all raised monies will be used to strengthen the CCHS Family Network’s education mission, including national conferences.
3. Family Support - Ten percent (10%) of all raised monies will be used to support CCHS families via the newly established Ellen Coates Whisman Memorial Fund. The CCHSF is a recognized 501c3 (tax exempt) nonprofit organization. No CCHSF or CCHS Family Network volunteer will be reimbursed in any fashion for their time or work. A volunteer Board of CCHS parents will oversee this effort. The CCHSF's work will focus on corporate/philanthropic donations, grant writing, and grass root/family efforts. CCHS is currently receiving an unprecedented amount of attention and NOW is our time to act! Our community is strong and TOGETHER we can make a difference! Please join us as we move forward with this exciting venture that will benefit all those that we love with CCHS!
