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


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.


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

      1. The 2015 CCHS Foundation Annual Report
      2. The 2016 CCHS Foundation Annual Report
      3. The 2017 CCHS Foundation Annual Report
      4. The 2018 CCHS Foundation Annual Report
      5. The 2019 CCHS Foundation Annual Report
      6. The 2020 CCHS Foundation Annual Report
      7. The 2021 CCHS Foundation Annual Report


Melinda Riccitelli, Co-chair

Rebecca Martine, Co-chair

Rachael Ballard

Adam Fox

Marne Harvich-Chergi

Kim Savino

Wendy Stroup