Dr. Vanderlaan founded the CCHS Network in 1989, following the birth of her son, Nico, in 1988. Dr. Vanderlaan is Executive Director and President of the CCHS Network. 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.
Desiree Cougle has been an Advisory Board member of the CCHS Network since 1993. Desiree’s son, Erik, age 26, 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.
Carissa Froyum-Roise became an active member in the CCHS Network in 2011, after the birth of her middle child Hans, and they attended their first family conference in 2013. Hans was diagnosed with a rare NPARM mutation of CCHS at four months old. He has been mask ventilated since his diagnosis. She joined the CCHS Board in 2015. She has expertise in research design, social activism, mask ventilation, and accessing services in a rural area. Carissa is a sociology professor at the University of Northern Iowa who specializes in the study of social inequalities. She lives in Denver, IA, with her partner and three children.
Rebecca Martine has served as the Co-Chair of the CCHS Foundation since its inception in 2014. 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.
Nico Meyering was diagnosed at birth with CCHS. After completing graduate coursework at Binghamton University, Nico spent two years with national service programs, where he worked with small nonprofits to improve their social media outreach, marketing efforts, and development. Within the CCHS Family Network, Nico focuses on new and international family assistance, social media outreach, and organizational development. An avid comic book collector, Nico donated most of his collection to his hometown library in 2016. After living in San Francisco, CA, Binghamton, NY, and Denton, TX, Nico lives in Albany, NY with his partner Brittany and their two cats.
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.
Sarah Yang has served on the CCHS advisory board since 2011, and she is now the Co-investigator of the CCHS NOW Registry. Her youngest child, Madilyn, was diagnosed with CCHS after birth in 2011. Madilyn received a tracheotomy at 4 weeks of age, and spent her first 6 months in the hospital. Professionally, Sarah has a PhD in Molecular and Cellular Pharmacology, where she focused on neuro-pharmacology and neuro-developmental disorders. She currently stays at home with her three children. Sarah lives in Birmingham, AL with her husband and three children.