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!
Donations are applied to three critical missions of the CCHS 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.
Please feel free to review the following documents for more information regarding the CCHS Foundation:
Melinda Riccitelli has been an active member of the CCHS Network since 2008. Melinda’s daughter, Sarah, 30 years old, was diagnosed at birth with CCHS (1989). Melinda accepted a CCHS Network Executive Board seat in 2011. In 2014, she took on the role of Co-chair of the CCHS Foundation. Melinda also serves as an Investigator of the CCHS Natural History Study, a longitudinal research project of CCHS funded by NORD, NIH, and FDA. In 2019, Melinda succeeded Dr. Mary Vanderlaan as President of the CCHS Network. Professionally, Melinda is a community college Biology professor, Human Physiology and Molecular Biology, and lives in San Diego, California.
Rebecca Martine has served as the Co-Chair of the CCHS Foundation since its inception in 2014. In 2019 Becky accepted the post of CCHS Network Vice President. Her youngest son, Luke, was diagnosed with CCHS shortly after birth in 2012 and received a tracheostomy at one month of age. Professionally, Rebecca is a Psychiatric/Mental Health Clinical Nurse Specialist who has specialized in Parkinson’s disease for over 15 years. Her area of expertise centers on disease education, outreach, and networking. Rebecca lives in Cherry Hill, NJ with her husband and three sons.
Rachael Ballard has served on the CCHS Board since 2015, shortly after the birth of her son Lincoln. Lincoln was born in December of 2014 and received his CCHS diagnosis and tracheostomy at one month of age, finally coming home after being in the NICU for two and a half months. Rachael is a professional fundraiser who has worked for non-profits in the Pacific Northwest and Texas for 10 years. She currently resides in Austin, TX with her husband Brandon and two children Flora and Lincoln.
Marne Harvich-Chergi is one of the founding board members of the CCHS Foundation. Her daughter Cassidy coded at birth and remained in the NICU until her diagnosis three months later. Marne is the President of Duval Tile and Decorating and handles all aspects of small business ownership. Her background includes studies in accounting, interior design and digital media at Florida State and University of Florida.
Wendy Stroup began serving on the Foundation board in 2016. Wendy’s daughter, Sadie, was born in January 2008 and was diagnosed with CCHS one month later. Wendy’s professional experience includes seven years as a product manager, specializing first in financial investment tools and later in consumer products. Wendy lives in Chandler, AZ with her husband and two children, Sadie and Deacon.
Kim Savino, JD joined the CCHS Foundation in 2018. Ms. Savino lost her CCHS sister, Lauren Savino, in 2015. Her niece, Lauren’s daughter, has CCHS. Kim is committed to improving the lives of those living with CCHS. Ms. Savino is a lawyer for the city of New York. She lives with her husband in Astoria, New York.
Caitlin Menello, Social Media