The CHERUBS Story
CHERUBS was created in February, 1995 by Dawn M. Torrence Williamson. Dawn is the mom of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Immediately she searched for a support group but there were none available that could help her. After spending hundreds of hours in the hospital's medical library and finding support only from parents met at the hospital, Dawn felt a great need for a CDH support group.
With the help of Shane's surgeon, Dr. Lesli Taylor, and the support of Shane's father, Shane's nurses, and friends made at the hospital, CHERUBS was started. CHERUBS is founded in memory of, and named for, Preston Montague and Andrea Jones, two very special CDH babies that were Shane's hospital roommates, and for all CDH babies that do not survive.
It is truly a grassroots organization, created when there was nothing. There was no internet, no other support groups to turn to or model after. We were just CDH parents trying to make the world a better place for families like ours. We started out very small with just a typewriter, kitchen table, $100.00 in donations, and 2 members. It took us 3 months to figure out how to get Non-Profit Status, but we did it! In 1996 we attended our first conference- the American Pediatric Surgical Convention in San Diego. Finally, the word was out and we started to grow.
We have organized international CDH conferences, spoken at pediatric surgical conferences, created 1000's of awareness items, published 3 books, helped to found ACDHO, started multiple awareness and fundraising campaigns and run the world's largest long-term CDH Research Study. Our list of milestones and accomplishments is long - thanks to the tireless and selfless efforts of our many volunteers.
Dawn Williamson by 2012 we grew to include over 4100 members from 54 countries and all 50 states, organized 90 volunteers, have been featured in newspaper articles, quoted in magazines, conduct research, and became the CDH referral center for most hospitals and other support groups. We still struggle and learn as CHERUBS grows, but the work is rewarding.
CHERUBS is run solely by volunteers. CHERUBS runs solely on donations but will soon look for grant funding to hire an in-house Secretary to help out with the vast amount of work it takes to run CHERUBS. Currently, we have only 1 full-time volunteer who works on CHERUBS - Dawn M. Torrence Williamson, who has given over 25,000 hours of volunteer time to CHERUBS over the last 15 years in memory of Shane.
Our goal is to not only help parents of children born with CDH but to lead the medical community into finding the cause and prevention of this devastating birth defect.