CCHS Day 2020: Be A CCHS Hero

6th Annual International CCHS Day: November 14, 2020

The CCHS Foundation is calling all HEROES to join our fight for a CURE! Mark your calendar for Saturday, November 14th! The theme for our 6th Annual International CCHS Day is “Be A CCHS Hero”. CCHS Day is our biggest annual fundraiser of the year and we hope to count on YOU!

Living with CCHS day after day can be lonely for patients and families. But when we take a step back, we can see that we are not alone! There are heroes in our lives who stand with us, support us, care for us, and encourage us. This CCHS Day we are shining a light on our unsung heroes!

#cchsday2020, #cchsawareness, #cchsheroes

Your Call To Action (see below for details):

  • Nominate Your CCHS Hero this CCHS Day
  • CCHS Heroes On The Move – Virtual Walk/Run
  • Buy A Customizable “I’m A CCHS Hero” T-Shirt and CCHS Masks
  • Buy A CCHS Day “Hero Bracelet”
  • Facebook Fundraisers
  • Social Media Support
  • Donations

Who in your life makes living with a CCHS easier, happier, more hopeful? This is your opportunity to acknowledge that person by nominating them as a CCHS Hero! We want to hear about the grandparent, sibling, aunt or uncle, nurse, doctor, neighbor, friend, babysitter, or teacher who has lifted your burden in some way. How did they step up and make a difference in your life? Your nominated CCHS hero will be featured in CCHS Day social media posts and announcements. Here are a few guidelines as you consider your nomination:

  • While you could likely name ten or more people who deserve the title of CCHS hero, we ask that each CCHS family nominate just one individual for this campaign.
  • CCHS patients and parents are the real SUPERHEROES! However, we are going to use this platform to honor those who have not been directly affected by CCHS yet have risen to the challenge. Please refrain from nominating CCHS patients and parents for this specific campaign.

Nominate your CCHS Hero this CCHS Day

CCHS Heroes On The Move – Virtual Walk/Run

This International CCHS Day 2020, we are asking our supporters to suit up and collectively conquer one mile for each CCHS warrior living on our planet through our Virtual Challenge! Together, we will march over 1300 miles while raising awareness for this orphan disease. Proceeds from the event will support the work of the CCHS Foundation with 75% going to the advancement of research, 20% going to education and advocacy, and 5% going to family support.

Registration is FREE!

The event will launch on November 1st and close on November 14th, International CCHS Day!

Just as every step counts… so does every penny! We are asking challenge participants to either make a personal donation or become a fundraiser. RunSignUp allows you to set up a fundraising team as well as Facebook fundraisers. Prizes will be rewarded to the top three fundraisers. All Participants will receive a “CCHS Hero” certificate at the end of the event.

For details and registration, click here.

Take your support to the next level by purchasing CCHS Day 2020 t-shirts, masks, and bracelets (see below). You can customize the t-shirt by adding the name of the individual you are supporting on the back of the shirt. Or visit our general store to select a “Team CCHS” t-shirt and shop a selection of CCHS masks. If you are going to customize your T-shirt with the name of your individual team, it will take 1-3 business days to get your design and customized page set-up in Bonfire. Please set-up your customized design as soon as possible.

To ensure delivery by CCHS Day, please purchase your t-shirt by October 12.

Click here to be directed to the CCHS Foundation Customized T-shirt store on Bonfire. Customized T-shirt store.

To purchase a Team CCHS T-shirt or a CCHS Mask click here: CCHS Foundation Store

Buy A CCHS Day “Hero Bracelet”
Purchase your “I’m A CCHS Hero” bracelet for all of the heroes in your life. Bracelets are $5.00 each. To buy a bracelet click here 

The easiest way to make a difference this CCHS Day is to create a Facebook Fundraiser on your personal page. You can share your journey with family and friends and invite them to Be A Hero by making a donation. The CCHS Foundation raised ~$60k last year through a Facebook Fundraisers alone. Imagine if we all used social media to advocate for our cause!

For detailed information on how to create a Facebook Fundraiser, go to

RunSignUp, the platform used for the virtual challenge, also offers the option to promote your participation directly through a Facebook Fundraiser.

Social Media Support

Please help promote this campaign by viewing and liking our social media pages! Feel free to post on your timeline and share!

Help promote this campaign by viewing, liking and sharing our social media pages and posts! And click HERE to update your Facebook profile picture using our CCHS Day 2020 profile picture frames (search CCHS Hero and CCHS Day for the two options).

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

You can also follow us on Twitter and Instagram.


Consider making a donation to the CCHS Foundation at

We’re Here To Help
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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