CHERUBS

CHERUBS (also known as CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support) is a Non-Profit Organization headquartered in Wake Forest, North Carolina. It was founded in February 1995 to support families of children born with congenital diaphragmatic hernia (CDH), a severe and often fatal birth defect.[1] Dawn M. Torrence Williamson is the founder and current president.

CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Type of site
501(c)III Non-Profit Organization
OwnerCHERUBS
Created byDawn M. Williamson
URLwww.cherubs-cdh.org
CommercialYes
RegistrationRequired for creating membership.

The mission of CHERUBS is to raise public awareness of congenital diaphragmatic hernia, encourage research to find the cause and prevention of congenital diaphragmatic hernia, and support all families affected by congenital diaphragmatic hernia. to support this mission, CHERUBS maintains a research library and compiles data from research surveys.[2]

History
Shane Torrence, CDH patient and son of CHERUBS founder

Dawn Williamson's son, Shane Torrence (1993-01-28 – 1999-09-11), 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, 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, Williamson brought her son home.[3]

At 21 years old, 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.[4]

Congenital Diaphragmatic Hernia Awareness Ribbon

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 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. In 2010, CHERUBS, along with several other organizations and thousands of CDH families and researchers, won the fight against the trademark.[5]

References
  1. Children's Hospital of Philadelphia, The Center For Fetal Diagnosis and Treatment, Parent Resources: Diagnoses-related Resources, Congenital Diaphragmatic Hernia, 2008
  2. The National Organization for Rare Disorders (NORD) Organizational Database and Support Catalog, 2008, Congenital Diaphragmatic Hernia
  3. Fox 22 News, Raleigh, North Carolina, 1993
  4. Oxford Public Ledger, reporter Kathy Judd-Jenkins, Oxford, North Carolina, 2002
  5. United States Patent and Trademark Office. http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
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