Dr. Vanderlaan founded the CCHS Network in 1989, following the birth of her son, Nico, in 1988. Dr. Vanderlaan recently stepped down from her role as Executive Director and President of the CCHS Network. Mary continues to manage new membership and the Network’s Facebook discussion board and she continues to advise the Network’s Research Advisory Board. Mary has long been a staunch and resolute champion of CCHS causes. Mary has traveled the world speaking about CCHS and, in addition to her work in the U.S., has helped many foreign groups establish a CCHS presence in their home country. Mary has been a formidable voice for CCHS and has empowered CCHS patients and their families to seek and lead full and productive lives. Professionally, Mary is professor emerita at Hartwick College and lives in upstate New York.
Rebecca Martine has served as the Co-Chair of the CCHS Foundation since its inception in 2014. In 2019 she joined the Executive Board as Vice President. Her youngest son, Luke, was diagnosed with CCHS shortly after birth in 2012. 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.
Desiree Cougle has been an Advisory Board member of the CCHS Network since 1993. Desiree’s son, Erik, age 28, was diagnosed at 3 months of age with CCHS. In 2015, she joined the Executive Board of the CCHS Network as Treasurer. In addition to administering the Network’s financial resources, Desiree has a significant role in the Network’s family support, education, and fundraising programs: She serves as a new family contact liaison for the Northeast region, conference co-chair, and Regional Coordinator for the CCHS Foundation. Professionally, Desiree works as a medical administrative assistant and lives in Northwest New Jersey with her family.
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. 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.
Adam Fox has served on the CCHS Board since January of 2020. His son, Teddy, was diagnosed with CCHS in February of 2019, 4 months after birth. Adam is a 15-year veteran of the Film/TV marketing industry and is using his experience in Hollywood to bring attention to CCHS. He lives in Los Angeles with his wife Blair, Teddy, and their dog Phyllis.
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.
Eddy Yang has served on the CCHS Advisory Board since 2011. Eddy’s daughter, Madilyn, was diagnosed at birth with CCHS. Dr. Yang is Chair of the Network’s Research Advisory Board. Dr. Yang received his undergraduate degree from Johns Hopkins University and his MD/PhD degrees from the University of Miami School of Medicine. He performed his internal medicine internship at Mount Sinai Medical Center in Miami Beach, FL and received his radiation oncology residency training at Vanderbilt University Medical Center in Nashville, TN. Currently, Dr. Yang is an Associate Professor and the inaugural holder of the ROAR Southeast Cancer Foundation Endowed Chair in the Department of Radiation Oncology at the University of Alabama, Birmingham. He is also Director of the UAB Nanostring Laboratory.