CLIMBING FOR A CURE
Hi, as many of you know, my twin boys live with a very rare disorder that affects their breathing (among other things). The condition is called CCHS. In less then 2 weeks I will be going on my next adventure - CLIMBING MOUNT RAINIER! This climb will be dedicated to the CCHS Foundation, in hopes of raising money for research and ultimately a CURE!
Congenital Central Hypoventilation Syndrome is a very rare lifelong and life-threatening disorder. It impairs the body’s ability to breathe automatically, especially during sleep. Those with CCHS are also at risk for cardiac pauses, cancer, GI dysfunction, seizures, and learning and behavioral issues. There is an estimated 1200 cases of CCHS world-wide. Currently, there is no cure for CCHS.
Because this condition is so extremely rare, there is VERY LITTLE money for research. I'd like to reach out to my friends and family in hopes of raising funds for research through the CCHS Foundation.
Joey and Adrian would love to see and experience some advancements in their lifetime and the only way is through RESEARCH. Anything you can donate will be truly appreciated.
THANK YOU!
Giuliana
Congenital Central Hypoventilation Syndrome is a very rare lifelong and life-threatening disorder. It impairs the body’s ability to breathe automatically, especially during sleep. Those with CCHS are also at risk for cardiac pauses, cancer, GI dysfunction, seizures, and learning and behavioral issues. There is an estimated 1200 cases of CCHS world-wide. Currently, there is no cure for CCHS.
Because this condition is so extremely rare, there is VERY LITTLE money for research. I'd like to reach out to my friends and family in hopes of raising funds for research through the CCHS Foundation.
Joey and Adrian would love to see and experience some advancements in their lifetime and the only way is through RESEARCH. Anything you can donate will be truly appreciated.
THANK YOU!
Giuliana
