The CCHS Network

Today, we are casting a light on Rhylee! Learn more about this incredible CCHS warrior whose strength, spirit, and journey continue to inspire our community.

Did you know that CCHS cannot be detected by prenatal ultrasound or standard prenatal testing? Most CCHS cases occur spontaneously without a family history. For individuals with CCHS, there is a 50% chance of passing the condition to each biological child, making genetic counseling and testing important considerations for some families. Learn more at https://cchsnetwork.org/cchs-diagnosis/.

What’s something important you’ve learned about CCHS since diagnosis? Share your experience in the comments; your insight could help support and guide other CCHS families on their journey. 💜

Today is the last day to vote for the 2026 CCHS Day T-Shirt Contest!

Thank you to everyone who submitted a design and shared their creativity with our community. Voting closes tonight at 11:59 PM. Make your voice heard and help us select this year’s winning design…as well as the winner of the MacBook Neo!

Click here to cast your vote:https://form.typeform.com/to/bctKyiGG

Stay in the know by subscribing to our newsletter. Get our latest news, events, and important announcements delivered straight to your inbox. Sign up today at https://cchsnetwork.org/donate/ .

Bill paddles for CCHS because this journey is deeply personal. His son Ian was born with CCHS 35 years ago. Today, Ian is thriving as an advocate, public servant, and CCHS Network board member. Bill paddles not only for Ian, but for every family living with CCHS and for a future shaped by research, support, and hope. Follow Bill’s journey: https://givebutter.com/bill-hatfield-2026-ltshwu

Voting is now open for the 2026 CCHS Day T-Shirt Contest!

Thank you to everyone who submitted a design and shared their creativity with our community. Voting begins today and closes on May 31 at 11:59 PM. Make your voice heard and help us select this year’s winning design…as well as the winner of the MacBook Neo!

Click here to cast your vote: https://form.typeform.com/to/bctKyiGG

Our DME Grant helps individuals with CCHS access essential durable medical equipment when insurance coverage falls short, providing up to $5,000 per year. Visit our website to learn more about eligibility and how to apply at https://cchsnetwork.org/cchs-durable-medical-equipment-grant-application/.

We are a family-run organization supporting children, adults, and families living with CCHS, a lifelong condition affecting over 4,000 families worldwide. Our goal is to ensure that no one faces this journey alone. We provide peer support, family education, research advocacy, and the steady community no one finds on diagnosis day. Learn more about us at cchsnetwork.org.

Bill Hatfield walked 2,200 miles of the Appalachian Trail in honor of the father he lost. This year, he is paddling for the son he keeps. Ian was born with CCHS, a rare disease most people have never heard of. Help Bill paddle for CCHS and support the families fighting alongside our community as he works toward his $10,000 goal. Learn more about Bill’s journey and help us make a difference: https://givebutter.com/bill-hatfield-2026-ltshwu.