CCHS Day 2021: Turning the Tide

7th Annual International CCHS Day: November 13, 2021

Over the past seven years, International CCHS Day has generated a surge of awareness and advocacy for our orphan disease. This year, we are TURNING THE TIDE to uncover greater ingenuity, research and treatment options. In anticipation of our 2022 CCHS Network Family Conference in Newport Beach, California, we invite our community of families and supporters to help give CCHS its day in the sun on November 13th, 2021

How To Jump In

Join The Wave

When energy is needed at a sporting event, fans will often start “the wave”. It soon travels around the stadium, unifying a group of people with a shared mission. That is what we are going to do this CCHS Day, except around the globe! We are asking our community to take a video of you/your family doing the wave and post it to your social media accounts along with the hashtags #jointhewaveforcchs and #cchsday2021. You can challenge friends to participate by tagging them in your posts.



Buy A CCHS Day T-Shirt

Take your support to the next level by purchasing CCHS Day 2021 swag wear. Click HERE to be directed to the CCHS Foundation T-shirt store on Bonfire.

Sales end on October 18, 2021 for delivery by November 10, 2021.

The easiest way to make a difference this CCHS Day is to create a Facebook Fundraiser on your personal page. You can share your message with family and friends while providing a convenient way for the to donate. The CCHS Foundation raised ~$75k last year through a Facebook Fundraisers alone, which equates to one pilot research study . 

Click HERE for detailed information on how to create a Facebook Fundraiser. 

Help promote our campaign by visiting, liking and sharing our social media pages and posts. Please be sure to tag @CCHSNetwork on all of your posts and use the hashtags #jointhewaveforcchs and #cchsday2021Stay tuned for a social media photo download package, including a Facebook profile image, and further instructions leading up to CCHS Day!

The CCHS Foundation has a public Facebook page open to all supporters.

You can also follow us on Twitter and Instagram.


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Just as every drop in the ocean counts, so does every penny. CCHS Network families and supporters can strengthen our impact by making a personal monetary contribution at Seventy-five percent (75%) of your donation will go to the  advancement of research, twenty percent (20%) wil go to education and advocacy, and five percent (5%) will go to family support, including scholarships for the upcoming conference and DME grants for patients in need.



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We understand that organizing a fundraiser can be a daunting task. The Foundation has a team of volunteers who are eager to share tips and experiences. Please contact us at with questions, ideas, and/or requests as you consider ways for your family to get involved!



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