History
Ms. Williamson's son, Shane Torrence (1/28/93-9/11/99), was born with undiagnosed CDH in 1993. Over the course of 6 and a half years, Shane underwent 6 CDH repairs, tying for the world record. Shane spent the majority of his first year of life in the hospital on life support. During times when visiting hours were over, Ms. Williamson researched CDH in the university medical library, looking for sources of support and information, but found support only from other parents. After 10 months of intensive care and numerous complications, Ms. Williamson brought her son home.
At 21 years old, Ms. Williamson filed non-profit paperwork and began to create CHERUBS from a typewriter on her kitchen table with one other member. In 1996, CHERUBS was invited to participate in the American Pediatric Surgical Association's annual convention. In 1997, CHERUBS conducted its first Congenital Diaphragmatic Hernia Research Survey. In 2000, CHERUBS became a source for a 20/20 piece on In Utero Surgery. Also in 2000, CHERUBS held its first International Member Conference in Orlando, Florida, offering families the opportunity to meet each other and to learn about Congenital Diaphragmatic Hernia from medical experts. In 2004, CHERUBS was represented at the International CDH Study Group of doctors.
In 2007, CHERUBS launched an on-line forum for CDH families and medical professionals. Also in 2007, CHERUBS members created and voted on the official Congenital Diaphragmatic Hernia Awareness Ribbon, which is baby blue, pink and pale yellow with clouds. CHERUBS also created several Congenital Diaphragmatic Hernia Awareness logos to appeal to the public to help raise awareness.
In 2008, CHERUBS was chosen as an official YouTube charity for CDH and featured on GoodSearch.com. In 2008 CHERUBS changed its name to CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.
CHERUBS also led the fight against the Congenital Diaphragmatic Hernia Awareness Trademark, protecting the rights of CDH families and medical professionals to raise awareness of CDH. This led them to write the Awareness Protection Congressional Bill and the Congenital Diaphragmatic Hernia Research Congressional Bill (http://www.cdhbills.org). In 2010, CHERUBS, along with several other organizations and thousands of CDH families and researchers, won the fight against the trademark.
Read more about this topic: CHERUBS
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