in the news
Stay up to date with the latest CCHS news, stories, and developments from our community and beyond. This section highlights media coverage, research advances, partnerships, advocacy efforts, and other moments that are helping raise awareness of CCHS and move our understanding of this rare disorder forward. We’re excited to share these stories and celebrate the people and progress helping shape a brighter future for the CCHS community.
We are thrilled to highlight Marne Harvich-chergi, CCHS Network Board Member, dedicated advocate, and proud mom to Cassidy. As Chair of the CCHS Network’s Governance and Conference Committees, Marne brings both professional expertise and a deeply personal commitment to everything she does.
Through her leadership in governance, Marne helps ensure the CCHS Network operates with integrity, transparency, and accountability, serving as a responsible steward of our mission and the resources entrusted to us for current and future generations of individuals and families living with CCHS. She also plays a vital role in planning our family conferences, creating meaningful opportunities for the CCHS community to come together, build lasting connections, learn from one another, and find support and hope.
Click on the image to read her story.
From Lab to Life: A Chat With Dr. Linda Dokas on Family, Research, and Hope We are thrilled to highlight Dr. Linda Dokas, retired scientist, passionate advocate, and proud grandmother to Henry. As Chair of the CCHS Network’s Scientific Advisory Committee, Linda brings both professional expertise and personal commitment to the forefront of our work. Her guidance is instrumental in shaping the Network’s research priorities and ensuring that our grant making supports impactful, high-quality science. With a deep understanding of both the scientific and human sides of CCHS, Linda leads with clarity, compassion, and an unwavering drive to improve outcomes for our community. |
