Can you imagine needing a machine to survive a nap on the couch, a snooze on a car ride, or a restful night’s sleep? Can you imagine living with a tube in your neck while trying to go through life? Can you imagine having leads implanted in your chest that force you to breathe?

For children and adults with CCHS, one of the rarest disorders in the world, survival means being tethered to mechanical ventilation. It means coping with afflictions of the heart and other organs that are damaged by the same gene mutation. It means living without the option of a medication in the twenty-first century.

BUT NEW HOPE IS ON THE HORIZON!


 

 

 

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 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!

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

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

Featured Video

“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! 

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featured-video

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 2022

Posted Wednesday, September 21, 2022 by melinda_cchs

CCHS Day 2022

NEW WEBSITE COMING SOON

Posted Wednesday, September 21, 2022 by melinda_cchs

NEW WEBSITE COMING SOON

In The News: 2021 Grant Awards

Posted Monday, January 3, 2022 by melinda_cchs

In The News: 2021 Grant Awards



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