CCHS Day, November 14th 2020


Mission: Building Community, Empowering Patients, and Championing CCHS Research

Seventy-five percent (75%) of money raised will be used to support CCHS research.

Twenty percent (20%) will be applied to the educational outreach plan of the CCHS Network.

Five percent (5%) will be directed to the Ellen Coates Whisman Fund to provide scholarships to CCHS families wishing to attend CCHS educational conferences.


Patients & Families

Review treatments and transitions informed from the 2010 ATS Statement.

Treatments


Professionals

We are committed to investigational studies, best clinical practices, and best patient-centered outcomes.

Projects


Donors

CCHS Foundation is the fundraising subsidiary of the CCHS Network.

About Us

In 2020, we have set a goal to raise $150,000. Please help us reach our goal. Thank You!

2019 was a milestone year for the CCHS Foundation. Through the generous donations made by the CCHS community, the CCHS Foundation raised $314,979.51, exceeding our annual goal of $250,000. And because of your charity since 2015 we raised a million dollars for CCHS research in 5 years! Thank You! Together we can beat CCHS!

It Only Takes A Second To Make A Difference.

Make a Donation



featured-video

Featured Video

“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.

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Featured Video

“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.

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Featured Video

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!

#MovingTowardsACure

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CCHS Day 2020: Be A CCHS Hero

Posted Sunday, September 20, 2020 by melinda_cchs

CCHS Day 2020: Be A CCHS Hero

CCHS Heroes 2020

Posted Tuesday, November 3, 2020 by melinda_cchs

CCHS Heroes 2020

In The News: 2019 Grant Awards

Posted Thursday, August 22, 2019 by melinda_cchs

In The News: 2019 Grant Awards



CCHS Network proudly partners with these organizations