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2 moms started a charity in 1995 simply to help the families of babies born with a severe birth defect, Congenital Diaphragmatic Hernia. There was no information or support in 1993 and the only goal was to help families not feel alone like we had. The charity exploded when the internet came along in 1997 and we have since grown into the world’s largest CDH charity. Now 24 years old, we help over 6300 patients in 70 countries. 6300 is just a drop in the bucket as to how many actual patients and families are out there. Over 300,000 babies have been born with CDH since 2000.
Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when a baby’s diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity. Surgery is required for survival and only half of these children survive in the US. In Third World countries the survival rate is less than 1%. The cause of CDH is still unknown but we are about 3 years away from narrowing down the gene to prove that it’s genetic and then we can focus on gene therapy to stop this monster. CDH is common. It has the exact same occurrence rate as Spina Bifida and Cystic Fibrosis, but only a fraction of the research funding and almost no awareness. Every 10 minutes in the world, a baby is born with CDH.
Our charity is responsible for being the voice and the champion for all these children worldwide. We have come a very long way and as we type this, we are working to get NGO status in the UK and Italy to participate in the research projects currently underway in the EU because these kids need a voice at this table that has more research opportunities.
We also work on committees at the NIH to push for funding for our kids and the charity is on Capitol Hill every year pushing our own legislation for research funding and awareness. Funding averages $5 million for CDH. That’s the average medical costs of 2 of these patients. 1600 children are born with CDH every year in the US.
On top of our research efforts, the patient registry we maintain to collaborate with many research centers, the funds we raise for the researchers (who come to us regularly in need of funding) and our constant presence in the research world to remind that community that these kids need help… we are also in charge of raising all awareness and providing most patient services. From family conferences, to newborn care packages, 24 hr support for parents to financial assistance for families to lighting landmarks like Niagara Falls and the Superdome for CDH Awareness Day… it falls on our shoulders.
We have learned as we have grown. We have made our path as there was no footsteps to follow. We will be the first to say that we have no idea what we are doing but our hearts are in the right places and we keep pushing forwards as needs and opportunities present themselves. We have 3 employees, 30 volunteers and an average annual budget of $250,000. That is not a typo. We are a fully transparent, 6% overhead, award winning charity that worked soley on volunteer manpower the first 15 years of our existence.
Right now, we are growing so big, so fast that we are in danger of losing the ground we have made. We need help. We need partners, supporters, corporations who believe in what we are doing and will help us to help these children. We need a big influx of cash to fund hiring more staff, help families and invest in saving these little lives. We cannot give up now.
Help us grow. Help us to help these children, the adult survivors and all the families affected by Congenital Diaphragmatic Hernia.