CDH International’s story begins with the first worldwide charity for Congenital Diaphragmatic Hernia: CHERUBS, which was founded in 1995 by Dawn M. Torrence Ireland.
After the birth of her son with undiagnosed in 1993, Ms Ireland searched for information and support for her family’s struggle with Congenital Diaphragmatic Hernia but was unable to find anything. The only information she had was a crudely drawn diagram on a hospital paper towel and large stack of medical journal abstracts and articles she scoured Duke’s Medical Library for every evening after visiting hours were over in the PICU where her son lived for his first 10 months.
Determined that no other family would be alone in dealing with CDH, she started the organization in 1995 with 1 other CDH mom she met in the hospital, Rhonda Montague, and a typewriter on her kitchen table writing letters to hospitals and birth defects organizations around the world. CHERUBS was named for Rhonda’s son, Preston, and another baby, Andrea, who also lost her fight with CDH.
When the internet came along, the charity blew up. Ms. Ireland learned how to create web sites in 1996 to put the charity on-line and families started pouring in from all over the globe.
You can read the CDH Timeline here to see the year to year growth of the organization as well as the researcher’s work.
Why CHERUBS Was Founded:
- To help parents understand what’s happening to their child by cutting through all the medical jargon that so many doctors use.
- To let parents know that they are not alone and that there are other people who know exactly what they are going through and how they feel.
- To advocate for pre-natal diagnosis of CDH and National Birth Defects Monitoring.
- To provide support in a time of need, through our many services or just by lending an ear.
- To help prevent complications by informing parents of potential problems and side-effects.
- To help doctors better communicate with the parents of their patients.
- To encourage awareness for a birth defect that receives little research funding and virtually no media attention.
The focus of CHERUBS has always been to help support and educate parents whose children have been diagnosed with Congenital Diaphragmatic Hernia. After two decades of supporting thousands of CDH patients, CHERUBS has grown and evolved to explore CDH research and awareness in addition to family support.
The CDH community has struggled for several years with both medical and support discrepancies. Survival rates vary widely due to procedure availability and patient management: United States facilities have a wide range of survival rates from 50% to 99%. Similarly, some European countries have an 80% survival rate, while others that do not offer ECMO for CDH patients only have a 25% rate of survival. The inconsistency of treatments available often requires CDH patients to relocate, adding additional logistic and financial stress to the family. To further complicate matters, The CDH support community has also been struggling with social media misinformation, unregistered charities, and support groups with no leadership or accountability. These issues make it very difficult for CDH families to find support and coordinate treatments within their means.
CHERUBS has been working to fix both the medical and the organizational support issues within the CDH community. In 2014, CHERUBS founded the Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO) along with other CDH charities to help families better identify legitimate support organizations. We are currently working with the ACDHO to accredit legally-registered charities, encourage and mentor new organizations, and inspire more professional charity management. Our goal is to become a resource for families to quickly find professional organizations with the highest standards of serving CDH families.
In early 2017, members of the medical community began approaching CHERUBS about the need for hospital accreditation for CDH treatments. The goal is to raise the standard of care both locally and worldwide to ensure quality care for all children affected by CDH. This is an incredible opportunity to raise survival rates globally, and our organization is honored and eager to work with the medical community to provide a better future for all babies born with Congenital Diaphragmatic Hernia.
In order to move forward with a focus on research and accreditation, the charity was restructured and reinvented as CDH International. This new organization reflects our goal as a collective group of hospitals, researchers, and charities working together on a global initiative to stop Congenital Diaphragmatic Hernia. CHERUBS still exists as a division of CDH International. The new President of CHERUBS, Tracy Meats, is dedicated to continue the support families through their CDH journeys. Founder and President of CHERUBS for 22 years, Dawn M. Torrence Ireland, has transitioned over to the role of President of CDH International. Tracy Meats has taken over as President of CDH International and Rhonda Montague has officially joined the Board of Directors 25 years after helping to found the organization, along with a wonderful team of other Board Members, as well as our Patient Advisory Board and Medical Advisory Board.
CDH International will focus diligently on continuing our CDH research by running the CDH Research Survey, accrediting hospitals and charities, publishing studies, lobbying for NIH funding for research, and funding research grants.
We have been blessed with wonderful mentorship from organizations such as the Cystic Fibrosis Foundation, DHREAMS hospitals, and other members of the CDH Study Group to help organize our efforts. We will continue to work with our Medical Advisory Board to set better standards. We hope to begin accepting applications for hospital accreditation by January 1, 2018, with the first site visits planned for Spring 2018. This is an incredible opportunity to raise survival rates globally, and our organization is honored and eager to work with the medical community to provide a better future for all babies born with Congenital Diaphragmatic Hernia.
Together, we can make a world of difference.
In 2020, CDH was also registered Non-Governmental Organization (NGO) in the UK and is currently working on NGO status in 3 more countries.
CDH International collaborates with many hospitals, labs, and other charities across the globe on various projects and has become the voice of the CDH community, representing the patient population, pushing research initiatives and leading fellow organizations.
CDH International is proud to mentor several organizations in ACDHO as well as leaders of other medical non-profit organizations and is an active advocate in the international rare disease community, working towards helping all patients across the globe diagnosed with rare or little-known diseases, genetic anomalies and birth defects.
CDH International has a separate Board of Directors / Board of Trustees for each NGO it registers.
Also with the governing Boards, we also have a global Parent Advisory Board made of up patients, parents and grandparents.
A global Medical Advisory Board is made up of the leaders in Congenital Diaphragmatic Hernia Research.
Each of our charities works with 3 Boards and also with our other charities to help children worldwide born with CDH in the best, most ethical, professional and productive ways possible.
CDH International collaborates with the World Health Organization, the Global Initiative for Children’s Surgery, the National Institutes of Health, the CDH Study Group, many other surgical, pediatric and rare disease associations.
Our greatest collaboration in the patient advocacy community is the co-founding of the Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO). ACDHO is a group of like-minded, registered, professional, peer supportive non-profits who seek help the CDH community as a whole. For a full list of organizations in the alliance, visit www.acdho.org
In the United States, every dollar is stretched at CDH International, and we do our absolute best to provide as much research and services to patients and families as possible.
Non-Profit in Every Way
- No Board Conflicts
- No Research Conflicts
- No Medical Referrals
- 3 Boards; Executive, Patient and Medical
- Annual independent audit
- No paid employees for the first 15 years
- Just 2 employees and over 100 volunteers
- No C-Level Salaries
- 990’s and Financial Statements available on our site
- Just 6% overhead
- For and about all CDH patients