CHERUBS
From Wikipedia, the free encyclopedia
| CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support | |
|---|---|
 The main page of CHERUBS. |
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| URL | CHERUBS Web Site |
| Commercial? | Yes |
| Type of site | 501(c)III Non-Profit Organization |
| Registration | Required for creating membership. |
| Owner | CHERUBS |
| Created by | Dawn M. Torrence |
CHERUBS (also known as CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support) is a Non-Profit Organization. It was founded in February, 1995 for families of children born with Congenital Diaphragmatic Hernia[1], a severe and often lethal birth defect. It was founded and currently led by Dawn M. Torrence in North Carolina
"CHERUBS is an international organization for families and care-givers of children and adults who are diagnosed with Congenital Diaphragmatic Hernia (CDH)[3]. As of January, 2008, we have over 2200 members in all 50 states and 33 countries. Our 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. [4] We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization."[5] 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. [6]
CHERUBS has had such a significant impact on the CDH world that children born with Congenital Diaphragmatic Hernia are often called "cherubs".
CHERUBS offers a "Parent Reference Guide," 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.[7]
CHERUBS mission 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.
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[edit] History
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support was founded in 1995 by Dawn Torrence, mother of Shane Torrence (1/28/93-9/11/99), who felt that there was a need for information and support for families of children born with Congenital Diaphragmatic Hernia. 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.[8]
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 it's 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 it's 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.[9]
In 2007 CHERUBS officially launched an on-line forum for all CDH families and medical professionals, offering more services and information than have ever been offered to families affected by Congenital Diaphragmatic Hernia. Also in 2007, CHERUBS members created and voted on the official Congenital Diaphragmatic Hernia 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.
Over the years numerous newspaper, magazine and television shows have interviewed CHERUBS and it's 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 through research, referrals, and studies.[10]
[edit] Organization Information
- CHERUBS is the world's first and largest Congenital Diaphragmatic Hernia organization. [11]
- CHERUBS has members in all 50 states and 38 countries.
- 2 sister organizations were created in Australia and the United Kingdom.
- CHERUBS has no paid employees or grant funding
- CHERUBS web site attracts over 300,000 visitors every month.
[edit] Current activities
- International CDH Family Conferences
- Dozens of Congenital Diaphragmatic Hernia Awareness activities
- Congenital Diaphragmatic Hernia Research Site to be completed in 2008
- CDH Street Sign Awareness Project
- CHERUBS provides on-line support and information, as well as newsletters and publications for families of children affected by Congenital Diaphragmatic Hernia
- Several large fundraising events are planned across the U.S.
[edit] References
- ^ Children's Hospital of Philadelpha, The Center For Fetal Diagnosis and Treatment, Parent Resources: Diagnoses-related Resources, Congenital Diaphragmatic Hernia, 2008
- ^ ABC 20/20 News: "Episode features tracheal occlusion patient", CHERUBS Listed as ABC's support source for CDH families. Show aired January 27, 2000
- ^ University of Wisconsin, The Family Village Library, Congenital Diaphragmatic Hernia
- ^ Creedmoor-Butner News, Butner, North Carolina, 2000
- ^ Official CHERUBS Web site: www.cdhsupport.org. 2008
- ^ Official CHERUBS Web site: www.cdhsupport.org. 2008
- ^ The National Organization for Rare Disorders (NORD) Organizational Database and Support Catalog, 2008, Congenital Diaphragmatic Hernia
- ^ Fox 22 News, Raleigh, North Carolina, 1993
- ^ Oxford Public Ledger, reporter Kathy Judd-Jenkins, Oxford, North Carolina, 2002
- ^ "Recent advances in congenital diaphragmatic hernia". N P Smith, E C Jesudason, N C Featherstone, H J Corbett, P D Losty. Archives of Disease in Childhood 2005;90:426-428
- ^ CHERUBS 2008 Brochure. http://cdhsupport.org/members/dload.php?action=file&file_id=8
