CHERUBS
Encyclopedia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
, a severe and often lethal birth defect. It was founded and currently led by Dawn M. Torrence in North Carolina
North Carolina
North Carolina is a state located in the southeastern United States. The state borders South Carolina and Georgia to the south, Tennessee to the west and Virginia to the north. North Carolina contains 100 counties. Its capital is Raleigh, and its largest city is Charlotte...
"CHERUBS is an international organization for families and care-givers of children and adults who are diagnosed with Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
(CDH). As of January, 2010, they have over 3200 members in all 50 states and 33 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, nurse practitioners, parents of CDH survivors and non-survivors, and some of the best pediatric surgeons in the world. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization." Membership is free.
CHERUBS members voted on the official Congenital Diaphramatic Hernia Awareness Ribbon, which is baby blue, pink and pale yellow with clouds to represent the babies lost to Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
.
CHERUBS has had such a significant impact on the CDH world that children born with Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
are often called "cherubs".
CHERUBS offers a "Parent Reference Guide," totebags, hospital information, an extensive web site, a CDH Baby Book, periodic newsletters, and brochures; has a parent-to-parent match up program; and provides referrals. In addition, the organization maintains a research library and compiles data from research surveys.
CHERUBS mission is to raise public awareness of Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
, encourage research to find the cause and prevention of Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
and support all families affected by Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
.
History
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
. Her son was born with undiagnosed CDH in 1993 and over the course of 6 and a half years underwent 6 CDH repairs, tying for the world record. Shane Torrence spent the majority of his first year of life in the hospital on life support. During times when visiting hours were over, Ms. Torrence researched CDH in the university medical library, looking for a source of support and information but finding support only from other parents. After 10 months in intensive care and numerous complications and severe side effects, Ms. Torrence bought her son home.
At 21 years old, Ms. Torrence 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 – the first parent organization to do so. In 1997, CHERUBS conducted its first Congenital Diaphragmatic Hernia Research Survey, the first such research to survey a large group of families affected by CDH.
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
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
from medical experts. In 2004, CHERUBS was represented at the International CDH Study Group of doctors.
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
. Also in 2007, CHERUBS members created and voted on the official Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
Awareness Ribbons 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 name underwent changes to CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.
CHERUBS also led the fight against the Congenital Diaphragmatic Hernia Awareness Trademark – http://www.ipetitions. com/petition/cdhawareness , 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.
Over the years numerous newspaper, magazine and television shows have interviewed CHERUBS and its members or have contacted CHERUBS as the media point of contact for CDH information. CHERUBS also works with the medical community to help find the cause and prevention of Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia
Congenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
through research, referrals, and studies.
Current activities
- International CDH Family Conferences – http://www.cdhconference.org
- Dozens of Congenital Diaphragmatic HerniaCongenital diaphragmatic herniaCongenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
Awareness activities - Congenital Diaphragmatic HerniaCongenital diaphragmatic herniaCongenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
Research Site – http://www.cdhsupport.org - CDH Street Sign Awareness Project
- Official Congenital Diaphragmatic Hernia Awareness Ribbon – http://www.cdhawarenessribbon.org
- CHERUBS provides on-line support and information, as well as newsletters and publications for families of children affected by Congenital Diaphragmatic HerniaCongenital diaphragmatic herniaCongenital diaphragmatic hernia is a congenital malformation of the diaphragm. The most common type of CDH is a Bochdalek hernia; other types include Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm...
- Several large fundraising events are planned across the U.S.
- CHERUBS Angel Ball held yearly in the Raleigh – Durham area – http://www.cherubsangelball.org
- Congenital Diaphragmatic Hernia Golf Tournaments – http://www.cdhgolftournament.org