CCHS Foundation has raised $95,062.40 toward our annual goal of $250,000. Your generosity makes a difference!
In 2018, through the generous donations made by the CCHS Community, the CCHS Foundation raised $257,589.65. This represents a milestone for our organization. Thank You!
2019 marks the 5th Anniversary of CCHS Day. With your help in reaching our annual donation goal of $250,000, we will have raised a million dollars for CCHS research in 5 years!
“CCHS” by Jeff Martini on Vimeo
CCHS is a rare genetic disorder of the central nervous system affecting ~1200 individuals worldwide. It impairs the body’s ability to breathe automatically, especially during sleep.
Those with CCHS are also at risk for cardiac pauses, cancer, GI dysfunction, seizures, and learning and behavioral issues.
2018 CCHS Conference Highlights
The 2018 CCHS Conference was well attended by CCHS Families, medical professionals, researchers, and device manufacturers from 19 different countries, as far away as Japan, Israel and Russia, many from Europe, and some from Latin America.
Medical professionals and researchers shared data and information about CCHS research and/or studies on CCHS patients. Presentations highlighted the progress made in understanding the etiology and molecular mechanisms of phox2b. CCHS families and patients shared best care practices and successful living independent guidelines, renewed old acquaintances and made new friends. Collaboration, teamwork, and cooperation was the overriding theme of the conference: whether in research, fundraising, clinical practices, or patient-care sharing, working together fosters community and moves us forward!