CCHS Network (@CCHSNetwork) header
CCHS Network (@CCHSNetwork) profile picture

CCHS Network

@CCHSNetwork

A 501(c)3 organization dedicated to raising awareness, funds, and family support for congenital central hypoventilation syndrome (CCHS), a rare orphan disease.

 www.cchsnetwork.org
linktr.ee/cchsnetwork
Joined September 2011
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Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)Photo by CCHS Network (@CCHSNetwork)
CCHS Network retweeted
Jeff Daley (@jeffdaley66) profile picture
Jeff Daley@jeffdaley6614 Nov 2020
Replying to @CharlizeAfrica @CCHSNetwork
July 17, 2009, though a different rare congenital defect, I learned “it only takes a second.” Thanks for sharing. P.S. - love the transparency, wish more charities did the same.
Image from Jeff Daley (@jeffdaley66)
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We can all be heroes. Visit  cchsnetwork.org & follow @CCHSnetwork to find out what you can do to bring awareness, donate & learn about Congenital Central Hypoventilation Syndrome. #cchsday2020 #cchsheroes #cchsawareness (just took my mask off for this pic)
Me in my CCHS Hero t-shirt.

ALT Me in my CCHS Hero t-shirt.

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TOMORROW IS #RareDiseaseDay! What do you have planned for the day? Visit rarediseaseday.org/events/wo… to find out what others are up to!
Image from Rare Disease Day (@rarediseaseday)
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The saga comes to an epic conclusion with our work for #StarWars: The Rise of Skywalker.
Image from LAssociates (@the_la_agency)
Image from LAssociates (@the_la_agency)
Image from LAssociates (@the_la_agency)
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For #GivingTuesday, I want to shine a light on my dear friend’s godson, Teddy, who suffers from an incredibly rare disease called CCHS. Please watch this PSA from @CCHSNetwork & consider donating to help find a cure! #CCHSAwareness cchsnetwork.org youtu.be/z82AkGHa6NM
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On our way to pick up our daughter's @ECADServiceDogs we decided to surprise her with @jonasbrothers concert in Baltimore. Hope they make it feel #likeitschristmas. This is part of her gift. We would love to share her unique story of living with CCHS. @CCHSNetwork
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THANK YOU to everyone who supported our 5th annual Intl. #CCHSDay2019. Donation update to come, but it was INCREDIBLY successful in raising #CCHSAwareness and donations to help find a cure. Let’s keep the momentum of CCHS Day going. It Only Takes A Second To...Continue the Fight.
Image from CCHS Network (@CCHSNetwork)
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Raising awareness for CCHS. Please support research to help all with this rare disease. Watch this PSA from @CCHSNetwork to learn more youtu.be/z82AkGHa6NM #CCHSAwareness #CCHSDay2019 cchsnetwork.org
CCHS Network (@CCHSNetwork) profile pictureCCHS Network@CCHSNetwork6 Nov 2019
It Only Takes A Second! We are proud to unveil our #CCHSDay2019 PSA featuring @hwinkler4real & @JonahHill educating the world on what YOU can do to help find a cure for Congenital Central Hypoventilation Syndrome #CCHSAwareness cchsnetwork.org 🎥 youtu.be/z82AkGHa6NM
Image from CCHS Network (@CCHSNetwork)
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Help me reach my goal for donations to @CCHSNetwork folks! #itonlytakesasecond #cchsawareness #cchsday2019 facebook.com/photo.php?fbid=…
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CCHS Network retweeted
Flex Mussels (@flexmussels) profile picture
Flex Mussels@flexmussels7 Nov 2019
At Flex, we want to help find a cure! Ahead of #CCHSDay2019 this weekend, please visit the @CCHSNetwork to find out what YOU can do to help cure our little friend Teddy and his incredibly rare disease called Congenital Central Hypoventilation Syndrome. #CCHSAwareness.
Image from Flex Mussels (@flexmussels)
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Joyful Teddy Fox cant breath on his on, BUT we can breath for him
MICHAEL EHRLICH (@MichaelEhrlich) profile pictureMICHAEL EHRLICH@MichaelEhrlich6 Nov 2019
Replying to @MichaelEhrlich
My amazing God Son Teddy stars alongside his superhero parents and extended family members @hwinkler4real & @JonahHill in @CCHSNetwork’s PSA educating the world on his INCREDIBLY rare disease Congenital Central Hypoventilation Syndrome. #CCHSAwareness 🎥 youtu.be/z82AkGHa6NM
Image from MICHAEL EHRLICH (@MichaelEhrlich)
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❤️🙏🏼 Please watch this PSA from @CCHSNetwork to find out what YOU can do to help cure my little friend Teddy and his incredibly rare disease called CCHS. #CCHSAwareness #CCHSDay2019 cchsnetwork.org youtu.be/z82AkGHa6NM
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Lets protect teddy
Image from Henry Winkler (@hwinkler4real)
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With full tables and hearts, we're now ready for #GivingTuesday. Please learn more here! givingtuesday.org/
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#CyberMonday 30 Online Stores That Benefit Nonprofits: buff.ly/2fmsMbF
Image from Nonprofit Tech for Good (@nonprofitorgs)
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CCHS Network retweeted
CCHS Network (@CCHSNetwork) profile picture
CCHS Network@CCHSNetwork9 Nov 2016
Please continue to share our campaign with friends. Thank you! cafepress.com/cchsfoundation
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Thank you Camden Catholic High School Field Hockey Team for "Lighting Up The Night For CCHS"! #CCHSDay2016 nbcphiladelphia.com/news/hea…
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“Fireflies are tiny messengers that whisper in the darkness.” ~Anonymous PLEASE RETWEET TO SHOW YOUR SUPPORT! @CCHSNetwork #cchsday2016
Image from Avery Biomedical (@averybiomedical)
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Light Up the Night with and raise awareness on Congenital central hypoventilation syndrome (CCHS)! #RareDisease #CuresNow @CCHSNetwork
Image from SanfordCoRDS (@SanfordCoRDS)
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Do you know about Goodshop? Do some good while you shop! Find us under CCHS Network. ow.ly/9uo0300Qp50#goodshop
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