In 2022 our fundraising goal is $250,000. Please help us meet our goal by making a donation.
Thank You for your support!
The COVID pandemic has made fundraising a challenge the last few years. But through the hard work of the CCHS Foundation team and the generous donations made by the CCHS community, the CCHS Foundation raised $600,729.00 in 2021.
Join the Wave and donate today!
“CCHS Day 2019 PSA w/Jonah Hill & Henry Winkler”
It only takes a second to … fall asleep. It only takes a second to … turn on a ventilator. It only takes a second to … make a difference. It only takes a second to … move us forward years.
Actors and activists Henry Winkler and Jonah Hill recently learned of CCHS through personal connections and offered to lend their voices to the cause. They graciously donated their time to make this public service announcement designed to highlight the complexities of CCHS and need for better advocacy, funding and management options.Watch More
“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.
“CCHS Day, 2021: Join the Wave” narrated by Beanie Feldstein
When energy is needed at a sporting event, fans will often start “the wave”. It soon travels around the stadium, unifying a group of people with a shared mission. For CCHS Day 2021, a wave traveled around the globe in support of those living with CCHS!Watch More
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!