The CCHS Network

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!

Stay in the know by subscribing to our newsletter. Get our latest news, events, and important announcements delivered st...
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/ .

Bill paddles for CCHS because this journey is deeply personal. His son Ian was born with CCHS 35 years ago. Today, Ian i...
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

Voting is now open for the 2026 CCHS Day T-Shirt Contest! Thank you to everyone who submitted a design and shared their ...
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

We are a family-run organization supporting children, adults, and families living with CCHS, a lifelong condition affect...
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.

Bill Hatfield walked 2,200 miles of the Appalachian Trail in honor of the father he lost. This year, he is paddling for ...
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.

05/15/2026

Why the firefly?

For many CCHS families, light carries deep meaning. It’s the glow of a ventilator at 2 a.m., the quiet work of neurons coordinating every breath, and a community of steady lights becoming something powerful together.

That’s why the firefly represents hope, resilience, and connection within our community. Join our Firefly Circle this week by signing up as a monthly donor. This week, for every new monthly gift of at least $5, Givebutter will donate an additional $10 to the CCHS Network. Become a firefly today: https://cchsnetwork.org/donate/

Join the Firefly Circle. Our monthly giving community is built on the idea that even the smallest light can make a lasti...
05/13/2026

Join the Firefly Circle.

Our monthly giving community is built on the idea that even the smallest light can make a lasting impact. Whether you give $20 or $100 a month, your steady support helps fund research, advocacy, and connection for CCHS families year-round.

Every month, you become one more light for families navigating CCHS, and that steadiness means everything. This week, Givebutter will donate an additional $10 to the CCHS Network for every new monthly donor who signs up with a gift of at least $5. Become a firefly today: https://cchsnetwork.org/donate/

Become a monthly donor for CCHS Network and support families living with CCHS. Choose your giving level and make a difference.

Happy Mother’s Day to all the incredible mothers and mother figures in the CCHS community. Today, we celebrate the love,...
05/10/2026

Happy Mother’s Day to all the incredible mothers and mother figures in the CCHS community. Today, we celebrate the love, strength, and endless care you give every single day; not only to your own families, but to our entire community. We are grateful for all that you do and hope you feel celebrated and appreciated today.💜

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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

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+17606333141

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