Research money for CCHS
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Hi everyone! As you might know, my twin boys live with a very rare disorder that affects their breathing (among other things). The condition is called CCHS...
Congenital central hypoventilation syndrome is a rare lifelong and life-threatening disorder. CCHS affects the central and autonomic nervous system which controls many of the automatic functions in the body such as heart rate, blood pressure, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more. The most recognized symptom of CCHS is the inability to control breathing that varies in severity, resulting in the need for life-long ventilatory support during sleep in some patients or all the time in others. There are estimated to be 1000 – 1200 cases of CCHS world-wide. Currently, there is no cure for CCHS.
Because this condition is so 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 in new treatments and ultimately a CURE!
There are a few hundred families that are part of a group called The CCHS Family Network. If every family can raise $1000, that would mean there could possibly be $400,000-$500,000 that will be used towards research!! My goal is to reach $1000. 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, THANK YOU!!
Here are a few links if you are interested in learning more...
In January 2015, a short Polish documentary titled Our Curse was nominated for an Academy Award. www.nytimes.com/video/opinion/100000003489430/our-curse.html
Ian's story...
http://orlando.citymomsblog.com/boy-stops-breathing-every-night/
Congenital central hypoventilation syndrome is a rare lifelong and life-threatening disorder. CCHS affects the central and autonomic nervous system which controls many of the automatic functions in the body such as heart rate, blood pressure, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more. The most recognized symptom of CCHS is the inability to control breathing that varies in severity, resulting in the need for life-long ventilatory support during sleep in some patients or all the time in others. There are estimated to be 1000 – 1200 cases of CCHS world-wide. Currently, there is no cure for CCHS.
Because this condition is so 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 in new treatments and ultimately a CURE!
There are a few hundred families that are part of a group called The CCHS Family Network. If every family can raise $1000, that would mean there could possibly be $400,000-$500,000 that will be used towards research!! My goal is to reach $1000. 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, THANK YOU!!
Here are a few links if you are interested in learning more...
In January 2015, a short Polish documentary titled Our Curse was nominated for an Academy Award. www.nytimes.com/video/opinion/100000003489430/our-curse.html
Ian's story...
http://orlando.citymomsblog.com/boy-stops-breathing-every-night/
Organisator
Giuliana Gallo-Memme
Organisator
Caledon, ON