Wednesday, April 25, 2012

Now that the Day of CDH Awareness has past...

The first word that comes to mind is "WOW!"

There were thousands of websites that picked up the CHERUBS Press Release, countless articles written, a handful of TV stations picked up the story, at least 17 states (and 4 cities) issued Proclamations, and hundreds of people affected by CDH marched in cities all around the country.  In fact, we were able to obtain a Proclamation from Illinois and Wisconsin along with the cities of Chicago, Peoria, and the village of Wheeling to support our efforts here in Chicago (and in Illinois). 

Our Parade of Cherubs in Chicago had over 50 people march around Children's Memorial Hospital to help raise awareness of congenital diaphragmatic hernia.  We had CDH angels represented, babies diagnosed in utero, children ranging from 1-5 years old, and even a 17 year old survivor.  We had parents, rainbow siblings, aunts, uncles, friends, siblings, cousins, and even a doctor.  We had three states represented.  And if I had asked everyone which hospital they received treatment at...I probably would have received at least 8-10 different answers.  

We all came together to help raise awareness of this birth defect that affects 1 in every 2500 births.  However, many attendees had never met another family affected by CDH before.  As many of the families started to chat to get to know one another better...I found myself along with many others responding to questions with the same answer, "we just don't know....that's why we need research."  I honestly felt bad....I had no answers.  But then one does...unfortunately. 

We (as a CHERUBS family) collectively did a tremendous amount to raise awareness this year.  Those who participated in the Washington D.C. were actually able to meet with their respective Senators to show support for the $50,000,000 CDH Research Bill.  However, we must continue to raise awareness everyday if we can ever hope for research dollars to get allocated to find a cause/cure for CDH.  We have gained some amazing momentum this year....let's keep it up!

Thanks to our sponsors who helped make the Chicago Parade of Cherubs a success:

Abigail Harenberg Photographer - for taking some amazing pictures at the event
BENT FORK BAKERY - for donating yummy cupcakes
The Bleeding Heart Bakery - for donating additional cupcakes
Clowning Around Entertainment/ Celebration Authority - for donating helium for our balloon launch
Sugar Beez - for making the awesome CHERUBS ribbon sugar cookies
Noelle Rudisill - for making the CHERUBS magnets that everyone loves so much
Children's Memorial Hospital - Circle of Friends - for agreeing to work with myself and CHERUBS to raise CDH awareness

Chicago Parade of Cherubs balloon launch

Tuesday, April 17, 2012

April 19th is almost here...

So the International Day of CDH Awareness is quickly approaching on April 19.  How are you planning to increase awareness of congenital diaphragmatic hernia??

Here are some quick and easy things you can do to show your support:

  1. Participate in the Chicago Parade of Cherubs at Children's Memorial Hospital or any other local event.
  2. Join and post pictures, videos, etc. in the Virtual Parade of Cherubs on Facebook, Twitter, Pinterest, and/or Google+.  For information on how to participate ask me or see this Facebook note.
  3. Donate a tweet per day to CHERUBS via  This great website makes it easy to show your support by signing up one time (and forgetting about it).
  4. Use the hashtag #SavetheCHERUBS on Twitter, Google+, and Foursquare all day on April 19th.
  5. Write your Congressman to let them know you support the $50,000,000 CDH Research Bill.
  6. Sign the CDH Research Bill petition.
  7. Add a twibbon to your profile picture on Facebook and Twitter.
  8. Write your local paper or community website.  Let them know your story.
  9. Ask your Governor, Mayor, Village President, etc. for a Proclamation for the Day of CDH Awareness on April 19th.
  10. Read the CNN iReport and post a comment. 
  11. Hold a mini-march are your child's school
  12. Tell everyone you meet your story!

I'm sure there are others...but this should get your started.  Feel free to comment with other ideas.  

Tuesday, April 10, 2012

April 19th Parade of Cherubs Illinois Press Release

PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)


Media Contact:
Kelly Maicon

Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

WAKE FOREST, NC (April 9, 2012) – On Thursday, April 19, U.S. Sen. Jeff Sessions
(R-AL) will meet with over 250 people participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of a birth defect called congenital diaphragmatic hernia (CDH). Sen. Sessions’ two-year old grandson, Jim Beau, is a CDH survivor.
In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions
is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.

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. It is as common as cystic fibrosis and spina
bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.

“CDH awareness and research is very important to me especially 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

The parade has 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. Children donned in wings
will begin the three-mile walk at 10:00 a.m. at the Lincoln Memorial; they will travel
past the Washington Monument and the White House, and conclude at the U.S. 
Capitol Building.

Massachusetts General's CDH Genetic Study Lab will have representatives walking
in the parade. During their visit to Washington they will take blood samples from 
relatives of CDH victims for genetic research.

“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Families from all corners of the country plan to participate in the parade, and we expect the number to grow as we get closer to the event.”

Several other cities across the U.S. are hosting a cherubs parade on the same day including, Chicago and Peoria, Ill.; Denver; Portland, Ore.; Seattle; and St. Louis. The St. Louis Fetal Treatment Institute, known for conducting in utero procedures on CDH babies, has been an integral part of organizing their local event. There will also be a national candle lighting in the U.K.

CHERUBS is working with Children's Memorial Hospital to put on the Chicago Parade of Cherubs.  The Illinois Representative for CHERUBS, Neil Rubenstein, is organizinng the Chicago Parade.  Starting at 11:00 a.m., participants will take part in a balloon launch at Oz Park to pay respect to all those Cherubs lost.  Then they will be walk 1.2 miles by the hospital and the Ronald McDonald House (which so many CDH families frequent during their child's often long stay at the hospital).  Close to 70 people (from three states) are expected to participate in this awareness event.

The Peoria Parade of Cherubs takes place on April 22, 2012 in Glen Oak Park beginning 
at 2:00 pm. The event was organized by Kristin Aigner and Sarah Polich. Kristin is an RN 
in the NICU and coordinates CDH Follow up Clinic at OSF St Francis Medical Center and 
is the sister of Christopher, who was born with CDH in 1973. Christopher grew his wings 
and flew to Heaven two months after he was born. Sarah 's daughter, Kalianna, was born 
park, followed by a ceremony to honor Cherubs in Heaven, ending with the joy of being together, refreshments and kids playing in the park.

A virtual parade of Cherubs has been set up on Facebook, Twitter, Google+, and Pinterest so people can show their support by uploading photos and videos whether they are participating in any of the day's events around the world or not.

If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit

Monday, April 9, 2012

CHERUBS - Congenital Diaphragmatic Hernia (CDH): PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

CHERUBS - Congenital Diaphragmatic Hernia (CDH): PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

Big Day on April 19th

April 19th is going to be a big day for CHERUBS around the world.  But for Illinois (Wisconsin, Indiana, and Michigan) members there are a number of ways to participate in the day's Awareness events.  Of all the events taking place on April 19th to raise awareness for the CHERUBS Day of CDH Awareness around the world, Illinois has two events of its own (with a 3rd nearby).  This doesn't count the Virtual Parade of CHERUBS that all CHERUBS members can participate in regardless of whether or not they can attend an actual parade.

The Chicago Parade of CHERUBS will be taking place at Children's Memorial Hospital in the Lincoln Park area of Chicago.  We are expecting around 70 people to come out for our balloon launch and walk around the hospital area to raise awareness of CDH.  There is still time to register for this event.

Chicago Parade of CHERUBS

The Peoria Parade of CHERUBS will be taking place at the Glen Oak Shelter at Glen Oak Park in Peoria.  This event will take place on April 22nd and is shaping up to be a huge event for CDH awareness as well.  There is still time to register for the Peoria event as well.

Peoria Parade of CHERUBS

Finally for those of you near the Missouri/Illinois border, there is the St. Louis Parade of CHERUBS.  This event will take place on 4/19 at SSM Cardinal Glennon Children's Medical Center in St. Louis.  This is going to be another huge parade for CDH Awareness.  You can still register at

St. Louis Parade of CHERUBS

How are you raising awareness of CDH on April 19th??

Celebration of CDH Awareness Daily EVERYWHERE