Sat October 31 - Sat November 14

The CCHS Foundation is calling all HEROES to join our fight for a CURE! 

Congenital central hypoventilation syndrome (CCHS) is an extremely rare and life threatening condition affecting an estimated 1300 individuals worldwide. In short, CCHS reduces or even eliminates one's ability to breathe while asleep and in severe cases, while awake. There is not a single drug or treatment available beyond daily use of ventilators or phrenic nerve stimulators. It is time to harness the power of modern medicine and secure a safer future for this brave yet at-risk community!
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! Together, we will march over 1300 miles while shining a bright light on 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.
To learn more about CCHS, go to


  • Register you and your family using the link above. Registration is FREE! 
  • You can walk/run a bit each day over the two week period or do it all in one outing. You can set a personal goal of 3.1 miles to achieve a 5k or even 26 miles for a full marathon. Or perhaps your superpower is slow and steady with a mile being your target. Just be sure to "submit your virtual results" on your RunSignUp page. You are part of a large squad assuming this mission...every step counts!
  • Just as every step 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, which links individual fundraisers of family and friends to highlight your collective impact. Prizes will be rewarded to the top three fundraisers! 
  • Build your own team of heroes! During registration, create a team in honor of your CCHS warrior and send the link to family and friends encouraging them to register for the challenge. 
  • The event will launch on October 31st and close on November 14th, International CCHS Day!
  • Dress the part by wearing your “I’m A CCHS Hero” t-shirt, mask, and other CCHS Day 2020 swag available at
  • Print your official bib (available on your participant page) and wear it proudly anytime you hit pavement.
  • Log all contributed miles on your participant page. Entries can be made after each walk/run or as a grand total at the end. 
  • When you are finished, print your CCHS Hero certificate and post your pictures to spread the word about this important campaign!
Virtual challenge Contact Info
If you have any questions about this virtual challenge, please contact the virtual challenge director at
Get Your Hero Gear

Take your support to the next level by purchasing CCHS Day 2020 t-shirts, masks and bracelets. You can customize the t-shirt by adding the name of the individual you are supporting or your team name on the back of the shirt. Or visit our general store to select a "Team CCHS" shirt and shop a selection of masks. We are also selling "I AM A CCHS Hero" bracelet for all of the heroes in your life! 

Custom T-Shirt Store: 

Team CCHS T-Shirt & Mask Store:

Bracelet Store:



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