CHERUBS: The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support

August 14, 2014
Points of Light Number: 
5283
Wake Forest, NC

After spending hundreds of hours in the hospital's medical library researching a rare birth defect in her newborn son and finding support only from parents she met at the hospital, Dawn M. Torrence Williamson recognized the opportunity to build support for a cause where none had existed before.

Dawn’s son, Shane Torrence (1/28/93-9/11/99), was born with Congenital Diaphragmatic Hernia (CDH), a birth defect that makes it difficult for babies to draw a breath. Congenital Diaphragmatic Hernia (CDH) occurs in approximately one in every 2,500 births, creating 1,600 cases in the U.S. each year. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. The cause of CDH is not yet known.

Imagine being a parent whose newborn child suffers from CDH, yet has nowhere to turn for answers, help and support. That is where CHERUBS comes into the picture. Started by Dawn in 1995, and impacted by Shane’s short yet meaningful life, the purpose of CHERUBS is to not only bring resources to parents of children born with CDH but also to rally the medical community around finding the cause and prevention of this devastating birth defect.

CHERUBS’ list of milestones and accomplishments is long thanks to the tireless and selfless efforts of their completely volunteer organization. CHERUBS has:

* organized international CDH conferences and presented at pediatric surgical conferences

* published three books about CDH

* helped to find the Alliance of Congenital Diaphragmatic Hernia International Organizations

* started multiple awareness and fundraising campaigns

* run the world's largest long-term CDH Research Study

Through CHERUBS hard work, last year alone over 4,500 families were supported, $50,000 in research money was raised, and CDH Awareness Day was recognized by many states, cities and the U.S. Senate during the month of April.

After much hard work and letter writing, reaching out to hospitals and other charities, and learning many skills along the way, this grassroots charity has grown into the largest CDH charity in the world and the first CDH charity in the United States. Even after Dawn’s son passed away, she continued to work tirelessly with the support of volunteers so that no CDH family has to be alone.

Know an organization like CHERUBS that is working hard to do something that has never been done before? Nominate them today for a Daily Point of Light Award!