April 19th 2013 Chicago Parade of Cherubs Press Release

SUMMARY:
Chicago, IL - CHERUBS, a non-profit organization, worked with Senators Jefferson Sessions (R-AL) and Benjamin Cardin (D-MD) to gain national awareness for the birth defect, Congenital Diaphragmatic Hernia, through Senate  Resolution 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

A local “Parade of Cherubs” awareness event will be held on April 19th to benefit national charity CHERUBS and research at Lurie Children's Hospital of Chicago.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity, and preventing lung growth. It affects 1 in every 2,500 babies, representing approximately 1,600 babies in the United States each year, half of which do not survive.

PRESS RELEASE: Grassroots Parent Group Works With Senator Sessions to Raise Awareness with Unanimous Senate Passing of April, 2013 “Congenital Diaphragmatic Hernia Month” Resolution

FOR IMMEDIATE RELEASE
Media Contact:
Neil Rubenstein
847.530.6070
illinois@cherubs-cdh.org

Chicago, IL (April 8, 2013) – On March 26, 2013, U.S. Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD) introduced Senate Resolution 85.

U.S. Sen. Jeff Sessions (R-AL), along with his colleague Sen. Ben Cardin (D-MD), issued the following statement on March 22nd after the unanimous approval of Senate Resolution 85, designating April 2013 as Congenital Diaphragmatic Hernia (CDH) Month:

“I am pleased that the Senate has unanimously declared April 2013 as National Congenital Diaphragmatic Hernia Awareness month. By joining together, we can help raise awareness of this serious birth defect. Early detection, good prenatal care, and awareness are vital for the survival, and healthy future, of the children born with this defect.”

On Friday, April 19th, U.S. Senator Jeff Sessions (R-AL) will meet with families affected by Congenital Diaphragmatic Hernia who are participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of the deadly birth defect. Sen. Sessions’ three-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.

Families will also meet with members of the House of Representatives on April 18th, which will be followed by a reception that evening on Capitol Hill to celebrate the passing of the Resolution in the Senate.

“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 Senator Sessions at last year’s event in Washington, DC.

CDH occurs when the diaphragm fails to form or to close totally and the 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.

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 11:00 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.

“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. “Not only are we celebrating the passing of this very important Senate Resolution for CDH awareness but our members have been gathering Proclamations from Governors and Mayors around the country as well to help raise awareness on a local level.”

CHERUBS is working with Ann & Robert H. Lurie Children's Hospital of Chicago to put on the Chicago Parade of Cherubs on April 19th. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizing the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Childerley Park in Wheeling to pay respect to all those CHERUBS lost. Then they will walk 2.5 miles through Wheeling and Buffalo Grove to help raise awareness of CDH. Close to 70 people (from four states) are expected to participate in this awareness & fundraising event.

“Join us after the parade at Lou Malnati's in Buffalo Grove for lunch and help us Pack Potbelly's in Wheeling to raise additional money towards CDH research (from 3pm - 6 pm on April 19th as well)” invites Rubenstein.

50% of the money raised will stay local and be donated to Lurie Children's Hospital of Chicago.

Several cities across the U.S. are also hosting “Parades of CHERUBS” on the same weekend including, Washington DC, New York, Chicago, Denver, Seattle, Dallas, Peoria, Portland, Salt Lake City, Phoenix, St. Louis and Philadelphia. In addition to the parades, there will be a CDH Baseball Night with the Las Vegas 51’s, a Sky Dive Fundraiser in Shropshire, UK, and both the CN Tower in Toronto, Ontario, Canada and City Hall in Dublin, Ireland, will be lighting up for CDH Awareness. Many families will also be holding fundraisers and awareness events in honor or in memory of their children born with CDH. A virtual Parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos.

April 19th is recognized as the International Day of Congenital Diaphragmatic Hernia Awareness by families in 60 countries.

Shands for Children at the University of Florida in Gainesville, DHREAMS CDH Genetic Lab at Columbia Presbyterian Hospital, the Congenital Diaphragmatic Hernia (CDH) Genetic Research Study at Massachusetts General, the St. Louis Fetal Care Institute, and The Center for Fetal Diagnosis and Treatment at CHOP have all been integral in raising CDH Awareness this year by sponsoring or assisting with Parades of CHERUBS at their respective hospitals.

A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/cdhsupport.

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

###
Additional Information:
Senate Resolution - http://www.govtrack.us/congress/bills/113/sres85
CHERUBS – http://www.cdhawarenessday.org/

S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

On March 20, 2013 Senator Jeff Sessions (R-AL), along with Co-Sponsor Senator Ben Cardin (D-MD) introduced  S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

On March 20, 2013 it was passed.

The United States Senate has officially designated April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

http://www.govtrack.us/congress/bills/113/sres85

This is an incredible victory for our cause in the battle against CDH and today, we celebrate!  

This resolution not only asks for awareness for an entire month but for research as well.   A press release and full text will be posted soon.

Even as we celebrate, the war is not yet over.  We are now rallying the troops to introduce and pass a resolution in the United States House of Representatives as well for CDH Awareness and also for Research.  

We also continue to gather proclamations from cities and states for more local awareness. 

The Parades of Cherubs across the country will now turn into celebrations also.

The Washington DC Parade of Cherubs has now changed focus from the Senate to the House as we march on Capitol Hill.

We ask our members and supporters to continue to push to raise more CDH Awareness, to join in and celebrate with us on April 19th by marching in a Parade of Cherubs, joining an event or participating in the Virtual Parade of Cherubs on-line.  

http://www.cdhawarenessday.org

This achievement has been many, many years in the making but it could not have been done without the support of our members, other CDH charities, all those who signed the petitions and all those who never gave up.   Our deepest, sincerest gratitude goes out Senator Sessions and his family for without their cherub, Jim Beau, and their amazing support none of this would be possible.

CHERUBS - Congenital Diaphragmatic Hernia (CDH): S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

Thank you, Thank you, Thank you!!

Well we did it!  What?  We got 10,000 signatures/supporters (our goal) on the CDH Research Bill petition. Now what?  The petition is still open, so if you have not signed it yet---please do so.  More is always better.  We need to convince the Review Committee that Bill S.3396 is worth passing on to the entire Senate for a vote.  All 10,100 (as of this post) will be printed out and hand delivered to the the Senators on the Committee in Washington D.C.  

If you have not done so, please write your Senators telling them how important this Bill is to you.  You can find letter templates and additional information at www.cdhbills.org.  We are on our way and 10,000 supporters is amazing, but we still have more work to do.  

In other news, the 1st ever Chicago Kids Carnival was a huge success.  We had at least 150 guests brave the torrential rain and tornadoes to help raise money for CHERUBS.  I am already looking forward to next year.  If you have not seen the pictures already...they can be found on the CHERUBS Facebook page.

So what's next?  There are so many events and fundraisers going on, it's hard to keep track....but here goes:

Petitions:

1.  You can still sign the CDH Research Bill - the more signatures the better
2.  You can sign the Light the White House up with Clouds on April 19 petition

Fundraisers/Events:

1. Toy Drive to benefit Hope Children's Hospital.  I am happy to bring donations down to the drop-off spot as long as I have the toys by 12/10.  
2. Enter Stage Left CHERUBS Fundraiser in Woodstock, IL
3. CDH Ornament sale - 25% of every sale goes to CHERUBS
4. Buy a CHERUBS charm on eBay - 100% of the purchase price is being donated to CHERUBS and get FREE shipping
5. Participate in the Give a $1 CHERUBS Fundraiser
6. Be on the lookout for more information about the 2nd Annual April 19th Chicago Parade of CHERUBS!

Other ways to participate:

1. Submit you story to be included in the "Stories of CHERUBS" book to be published in February 2012
2. Submit your favorite recipes to be included in the CHERUBS Cookbook.  Just send your recipe to cherubscookbook@yahoo.com.  Be sure to include you name and the name of the cherub you are honoring/supporting.

CALL TO ACTION: Ask Your Senators to Support Senate Bill S.3396 for CDH Research

Sen. Sessions joined with Sen. Ben Cardin (D-MD) to introduce legislation this summer to raise public awareness of Congenital Diaphragmatic Hernia (CDH) and place a greater emphasis on medical research to diagnose and treat the disease. Sessions’... grandson, Jim Beau, is a CDH survivor:

"I am honored to introduce this bill today, and am grateful for Senator Cardin’s support. This is a critical issue and early detection and awareness make a dramatic impact in the survival rate. However, more research is needed and this legislation asks the National Institutes of Health to determine whether a greater emphasis can be placed on CDH research within its existing budget."

CHERUBS is so proud to be a part of this historic event, the first step to real help to save the lives of babies born with CDH. 

CHERUBS - Congenital Diaphragmatic Hernia (CDH): CALL TO ACTION: Ask Your Senators to Support Senate Bill S.3396 for CDH Research

So much to do, so little time

There's so much going on in the CDH community both locally and across the nation that I almost don't know where to start.  This post is going to be more of a list of some of the great things going on right now.  I want to make it as easy as possible for you to be able to participate in as much as you feel compelled to.

CDH Research Bill: A Senate committee is currently reviewing the $50,000,000 CDH Research Bill (Senate Bill S.3396).  It goes without saying that his is HUGE for the entire CDH community.  Roughly $4,000,000 is allocated towards CDH research per year vs. $79,000,000 for Cystic Fibrosis.  What can you do?  Write your/our Senators to let them know that you support this Bill.  Just for everyone's knowledge...this Bill is just asking for money that is already appropriated towards medical research to be reallocated towards CDH research.  This isn't incremental dollars added to the budget....the money is already there and being spent on other birth defects and diseases.  Here are some links to make it easier for you:

• Sign the Change.org petition showing your support (we need around 3,600 signatures to reach out goal)
• Write your senators!  This is crucial and here are some templates to make it that much easier.  Especially important is writing the 22 members of the committee reviewing the Bill.  If the Bill doesn't get approved by the Committee...then that's it.  This template also includes the addresses of all 22 senators in the reviewing committee.
• Email your senators...email addresses are very easy to find
• Set up a meeting with your Senators
• Review the actual Bill.
• Track the progress of the Bill. 

CHERUBS Fundraisers & Events:  There are so many events and fundraisers that I am having trouble keeping track right now.  Here are a few of them:

• September 15 - CHERUBS Indiana Picnic
• October 14 - Chicago CHERUBS Kids Carnival...everyone is welcome!  Here are the Facebook and Eventbrite links for additional information.  This is going to be a great fundraiser and a great time!
• October 20 - CHERUBS Masquerading Angels Ball...this is CHERUBS largest event/fundraiser and sure to be a lot of fun!
• Along with the this is the 50/50 Raffle for Research going on right now.  The goal is to sell 1000 tickets so the raffle winner would win $10,000 and the remaining $10,000 would go towards CDH research.  I have tickets that you can buy direct or feel free to purchase them online.
• For more events, check out the CHERUBS Event Calendar
• Online Fundraisers
• 50/50 Raffle for Research - Tickets are $20 a piece
• $5000 CHERUBS Challenge - This is a great fundraiser from the friend of CHERUBS' own Fundraising Coordinator (Melissa).  Valerie has offered to shave her head (and donate her hair to Locks of Love) if she can raise $5000 for CHERUBS.  I believe someone else has also stepped up and offered to shave her head too if we can raise $10,000 for CHERUBS.
• Marathon fundraiser - The Green family is running a marathon to raise money for CHERUBS!
• Give $1 CHERUBS Fundraiser - This is a catch-all fundraiser that I created for anyone who wants to donate directly to CHERUBS.

I probably missed something, but this is a good start...

  

CHERUBS - Congenital Diaphragmatic Hernia (CDH): Governor of Illinois Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness

CHERUBS - Congenital Diaphragmatic Hernia (CDH): Governor of Illinois Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness.

We also have a Proclamation from the Mayor of the city of Chicago!

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)

FOR IMMEDIATE RELEASE

Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com

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
 year.”

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 www.cdhsupport.org.