- Posted April 15, 2014 by
Wake Forest, North Carolina
This iReport is part of an assignment:
Living with a rare disease?
Senators, Governors, Mayors and Families Raise Congenital Diaphragmatic Hernia Awareness
40 States and the U.S. Senate proclaim awareness for little known birth defect that strikes 100’s of babies each year in the United States.
WAKE FOREST, NC (April 15, 2014) – It’s been a whirlwind few years for grassroots charity, CHERUBS, in their quest to raise awareness of Congenital Diaphragmatic Hernia.
Since the first small event on April 19th, a parade in Raleigh, North Carolina in 2011, the organization’s efforts have grown exponentially with other charity members of the Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO). In 2012 and 2013, families descended upon Capitol Hill to meet with Senator Jeff Sessions (R-AL), who along with Senator Ben Cardin (D-MD), have sponsored Resolutions to make April “Congenital Diaphragmatic Hernia Awareness Month”. On April 7, 2014, once again the Senate unanimously approved a Resolution for CDH Awareness with the passing of S. Res. 144.
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. Globally, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.
“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year” said Sen. Session of last year’s event.
Events have been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications.
“We are thrilled to have a new Awareness Leader at our charity, Felecia Woodruff, who has stepped up to help families raise more awareness in their local communities through requesting proclamations and buildings to be lit and a new Fundraising Leader, Karla Holt, who is busy helping families who want to plan fundraisers for our charity, which is another big way to raise CDH Awareness” says Williamson. “With April 19th falling on Easter weekend this year, we were worried that we wouldn’t be able to pull off big events or gain a lot of attention for these babies, but our volunteers have planned many state events and our families have worked even harder to raise awareness. Hospitals are also joining in again this year to help raise awareness. We are extremely proud that we have accomplished so much so far”.
The CDH community has planned events for this year in Raleigh, Dallas, Portland, Fresno, Las Vegas, Phoenix, Philadelphia, Salt Lake City, Columbus and Manchester, England. Shands for Children Hospital in Gainesville and the St. Louis Fetal Care Center held events this past Saturday for their patients and families to raise awareness of CDH. Various other events and fundraisers are being held by families around the country. The Superdome in New Orleans, CN Tower in Toronto, Dublin City Hall, Miami Tower, PECO Building in Philadelphia, Wells Fargo Building in Charlotte and many other buildings are lighting pink, baby blue and yellow for CDH Awareness on April 19th. So far 40 states and 52 towns have proclaimed April 19th as a Day of Congenital Diaphragmatic Hernia Awareness.
“CHERUBS has members in 60 countries now and we also work with over 2 dozen other organizations through ACDHO. We expect families around the world to participate in small and large ways throughout the rest of the month of April to help raise Congenital Diaphragmatic Hernia Awareness” says Williamson. “We are also working hard on gathering those remaining 10 states and getting a Resolution introduced and passed in the House. We are a large group of very passionate and determined moms, dads, grandparents, survivors of CDH. We do not take ‘no’ for an answer when it comes to getting these children help”.
Help is indeed needed for this very underserved community. Congenital Diaphragmatic Hernia is as common as Cystic Fibrosis and Spina Bifida but has a fraction of the awareness and research funding. In 2010 alone, NIH (National Institutes of Health) provided $11 Million in research funding for Spina Bifida and $79 Million for Cystic Fibrosis. CDH was awarded just $4 Million in research funding. The charity funding difference is even greater with the largest Cystic Fibrosis charity receiving over $313 Million, Spina Bifida’s largest charity raised over a half a million dollars and CHERUBS, the world’s CDH charity, raised just over $59,000 to service the same number of families. While the other 2 more well-known causes have hundreds of charities providing services and research funding, CDH has just a handful of registered charities helping families and funding research.
“Awareness is key” says Williamson. “Without awareness, there is no funding. No one wants to donate to a cause they have never heard of. It’s very frustrating that our children are often overlooked but until we raise more Congenital Diaphragmatic Hernia Awareness and get the public to know about and care about these babies, the funding will not be there. So we struggle to fundraise and raise awareness on our own every way that we can and to continue to provide free services to families and fund research as much as we can. Hopefully, someday soon a large corporation or well-known celebrity will take our cause under their wing and help these children on a level that our charity is unable to do even with state and federal proclamations and lit buildings. We raise awareness to raise research funding. Babies are dying by the dozen every day and we have no idea why or how to stop it. That is unacceptable”.
A virtual parade of Cherubs has been set up on Facebook, Twitter, Instagram and Pinterest so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events. Families are also lighting candles at 7:00 pm in their time zones worldwide as well as many are releasing balloons, lanterns and butterflies to honor and remember their children.
If you would like to help spread the word, or to learn more about CHERUBS and the upcoming events, please visit www.cdhawarenessday.org.