Dear Family and Friends,
As many of you may know, my daughter Roni was born with a rare condition known as Central Congenital Hypoventilation Syndrome (CCHS), a life-threatening condition which causes the impairment of automatic messages from the brain to breathe and for the heart to beat, thus requiring the use of a ventilator or pacemaker for the patient to stay alive. This condition affects only about 1200 patients worldwide. Recently, CCHS was added to the National Organization for Rare Disorders (NORD).
CCHS parents are making an effort to raise awareness and much needed research funds, so that someday this will no longer be a life-threatening diagnosis. Between now and International CCHS Day, November 12, 2016, you can help spread the light by donating $25, $50, $100 or any other amount.
As a special incentive, I will be offering one of my handmade art quilts as a gift to a donor to be chosen at random. (there will be a varied selection of different sized quilts from which the winning donor may choose)
You may donate at cchsnetwork.org or send a check to:
PO Box 230087
Encinitas, CA 92023-0087
You can also donate through Facebook, at The CCHS Foundation.
Make sure to specify that your donation be considered for the quilt giveaway.
Thank you so much for you help!