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!

Donation Distribution

Research

Seventy-five percent (75%) will be used to support CCHS research and hopefully lead to better treatment options beyond mechanical ventilation. Our renowned Research Advisory Board is ready and eager to disseminate grants using these funds. There is no available medication to treat CCHS, however we are encouraged that with adequate research this will soon change.

Education

Twenty percent (20%) will be applied to the education plan of the CCHS Network. This will allow for the continuation of national family 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 26+ years.

Ellen Whisman Family

Five percent (5%) will be directed to the Ellen Coates Whisman Fund. 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.

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

Marne Harvich-Chergi

Wendy Stroup

Adam Fox

Maddie Schueler

Michael Putnam

Ian Hatfield

Anna Culbertson