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The CCHS Network

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Encinitas, CA
The CCHS Network

Our MISSION is to fund/support Congenital Central Hypoventilation Syndrome research, raise awareness, All proceeds will go directly to the identified goals.

Congenital Central Hypoventilation Syndrome, CCHS, is a complex genetic disorder that is typically diagnosed at birth without prior warning. It affects the autonomic nervous system, most dramatically the ability to breathe involuntarily during sleep, along with many other multi-system complications. There are only about ~1200 individuals worldwide with CCHS. CCHS, is considered an “orphan disease”

with little funding and research attention. Over the past several years, we have witnessed additional cuts in NIH grants and similar resources for those researchers with an interest in our field. The CCHS Family Network (www.cchsnetwork.org) has chosen to address this issue with the establishment of The CCHS Foundation (CCHSF). The CCHSF is designed to raise funds in support of three important missions:

1. CCHS Research - Seventy percent (70%) of all raised monies will be used to fund research grants distributed by the CCHS Family Network Research Advisory Board (RAB).

2. Education & Outreach - Twenty percent (20%) of all raised monies will be used to strengthen the CCHS Family Network’s education mission, including national conferences.

3. Family Support - Ten percent (10%) of all raised monies will be used to support CCHS families via the newly established Ellen Coates Whisman Memorial Fund. The CCHSF is a recognized 501c3 (tax exempt) nonprofit organization. No CCHSF or CCHS Family Network volunteer will be reimbursed in any fashion for their time or work. A volunteer Board of CCHS parents will oversee this effort. The CCHSF's work will focus on corporate/philanthropic donations, grant writing, and grass root/family efforts. CCHS is currently receiving an unprecedented amount of attention and NOW is our time to act! Our community is strong and TOGETHER we can make a difference! Please join us as we move forward with this exciting venture that will benefit all those that we love with CCHS!

06/05/2026

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.

06/04/2026

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/.

06/02/2026

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. 💜

05/31/2026

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

05/28/2026

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/ .

05/27/2026

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

05/26/2026

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

05/20/2026

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/.

05/19/2026

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.

05/17/2026

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.

Address

Encinitas, CA
92024

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm
Saturday	10am - 8pm
Sunday	10am - 2pm

Telephone

+17606333141

Website

http://linktr.ee/cchsnetwork

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