CCHS OPERATIONS - CCHS Network

CCHS NETWORK and FOUNDATION

Together, we can undo Ondine. CCHS is an orphan disease. For generations, funding to investigate causes and seed treatments has been extremely limited. Now that researchers have found ways forward, imagine the revolutionary leaps in science that that your tax-deductible gift will make possible.

The CCHS Foundation is a division of the CCHS Family Network, a 501(c)(3) organization.

Our mission focuses on raising funds to further CCHS research via annual grant awards, raising international awareness and facilitating educational programs, and supporting CCHS families in need. We champion scientific and informative advances that will empower individuals living with Congenital Central Hypoventilation Syndrome and their loved ones to live full and productive lives. Our vision is a future where CCHS is no longer a life-threatening diagnosis!

Research

Your donation brings hope to families and drives progress toward a future where CCHS is no longer a life-threatening diagnosis. Our renowned Research Advisory Board is ready and eager to disseminate grants using donated funds. There is no available medication to treat CCHS, however we are encouraged that with adequate research this will soon change.

Education

The work of the CCHS Network inspires hope and drives progress toward ending the threat of CCHS. Our Education fund will allow for the continuation of international family and research conferences and international outreach. The Network has been a beacon of support and information for both CCHS families and researchers in the United States and abroad for 35+ years.

Ellen Whisman Family

The Ellen Coates Whisman Fund directly supports CCHS patients and families. Ellen was a CCHS mother and incredible advocate who lost her battle to cancer in August 2014. This Fund provides scholarships to CCHS families wishing to attend CCHS educational conferences, as well as durable medical equipment grants (need-based).

Additional Resources

Please feel free to review the following documents for more information regarding the CCHS Foundation:

Our one-page marketing brief can be kept for quick reference or distributed among interested parties

CCHS NETWORK EXECUTIVE BOARD

Melinda Riccitelli, President

Rebecca Martine, Vice President

Desiree Cougle, Treasurer

CCHS NETWORK ADVISORY BOARD

Anna Culbertson

Adam Fox

Marne Harvich-Chergi

Ian Hatfield

Michael Putnam

Maddie Schueler