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International CCHS Day
September 27, 2025

International CCHS Day is approaching, and we want to recognize the strength and resilience of our incredible community. Join us in spreading awareness about CCHS by casting a light on the brave individuals and families who inspire us every single day. Together, we can ignite change.

CCHS Day Merchandise

Are you looking for ways to show your support for International CCHS Day on September 27? One way to support our community is by purchasing our 11th annual CCHS swag. This year, we’re offering t-shirts and sweatshirts in both youth and adult sizes, available in black, sky blue, and white. Every item sold helps fund groundbreaking research, support education initiatives, and provide direct assistance to CCHS families. Order by August 27 to get your gear in time for CCHS Day! Order yours today: https://www.bonfire.com/11th-annual-international-cchs-day-2025/

Buy a CCHS Firefly Pin

How to Get Involved

Social Media Frames

A simple way to stand in solidarity and raise awareness about CCHS is to add a CCHS-themed frame to your profile picture. Please complete this Google Form with your preferred photo and where you’d like us to send it. To ensure that you receive your frame before September 27, please submit by September 20. You can also download the general frame below, which you can upload to your profile picture.   

Download the General Social Media Profile Frame Here

Sample Social Media Posts

As we raise awareness for CCHS Day, here are a couple of social media posts that you can download and post to your social media accounts and stories. You can use the caption below or write something more personal about why CCHS Day matters to you.

Before CCHS Day

Download CCHS Day Post
Download CCHS Day Post

On CCHS Day

Download CCHS Day Post
Download CCHS Day Post

Optional Caption

Today, we cast a light on one of the rarest conditions in the world. In honor of International CCHS Day, we ask that you take a moment to reflect on life without the guarantee of a next breath. Life where a machine keeps you alive every time you fall asleep. Life with a condition so rare that there is not one available drug in the 21st century.

Now imagine that you have the power to improve that life for the approximate 3,000 individuals living with Congenital Central Hypoventilation Syndrome. With your support, we can accelerate research, fund groundbreaking treatments, and bring hope to our small but determined community.

Please help us ignite change by making a donation at www.cchsnetwork.org/donate or text “Shine4CCHS” to 44321. Maximize your impact with the Double the Donation option, which may enable a match contribution from your employer. Every penny donated brightens our path forward! 

To learn more about CCHS, visit www.cchsnetwork.org. 

#cchsday2025  #castalightoncchs #cchsawareness #raredisease

Fundraising on Social Media for CCHS

How to Promote our Sweepstakes

This International CCHS Day, we’re inviting you to be part of something truly special. Actress and advocate Leighton Meester is teaming up with us to cast a light on CCHS. Every $5 donation enters you for a chance to win a private Zoom coffee date with Leighton Meester. For more information, visit the RallyUp website, https://go.rallyup.com/cchs/Campaign/Details.

How it works:

  • Donate $5 or more for your chance to win.
  • The more you give, the more chances you have.
  • One winner will be selected to join Leighton for this unforgettable experience.

Promote our sweepstakes by spreading the word to your friends, families, co-workers, and on your social media. You can always repost our content to your stories or download our sweepstakes post below.  

Download Sweepstakes Graphic

Optional Caption

This International CCHS Day, the CCHS Network is teaming up with actress and advocate Leighton Meester to cast a light on CCHS! Congenital Central Hypoventilation Syndrome (CCHS) is a rare and life-threatening condition that affects how the body controls breathing. Families living with CCHS face extraordinary challenges, and your support helps us accelerate research, fund groundbreaking treatments, and provide hope to our small but determined community.

Every $5 donation enters you for a chance to win a private Zoom coffee date with Leighton! The more you give, the more chances you have to win.

Help us raise awareness, support families, and fund critical research. Enter to win: https://go.rallyup.com/cchs/Campaign/Details

 #cchsday2025  #castalightoncchs #cchsawareness #raredisease

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