CCHS Heroes On The Move - Virtual Challenge

I am suiting up to become CCHS Hero...will you join me? 
 
Congenital central hypoventilation syndrome (CCHS) is an extremely rare and life threatening orphan disease affecting an estimated 1300 individuals worldwide. There is not a single drug or treatment available beyond mechanical ventilation. It is time to harness the power of modern medicine and secure a safer future for this brave yet vulnerable community! To learn more about CCHS, please visit www.cchsnetwork.org. 

This cause is very near and dear to my heart.  Santi is my niece's first born. While Santi is thriving, defying all odds and reaching significant milestones, our whole family knows managing his disease is a continuous challenge not only to him but also to his parents. Our fervent prayer is to find a cure for his disease and this will not be possible unless there are more funding for research. 

 
I am putting together a team of heroes to take part in a virtual challenge November 1st through November 14th in honor of International CCHS Day 2020. Supporters from around the globe will 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 important cause.

Your Call To Action:

• Register as a member of my team using the included link. You can walk/run as far as you want...every mile counts! You can do a little each day over the two week period or all in one outing.  

• If you cannot participate in the challenge, please consider making a donation to this very deserving cause. Just as every mile counts, so does every penny! 

"Day after day, ordinary people become heroes through extraordinary and selfless actions to help their neighbors." -Sylvia Mathews Burwell