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/

So much CDH Awareness Going On!

There so much going on in Illinois with respect to CDH awareness and around the world, I almost don't know where to start.

But first and foremost is our petition to get the +The White House (@WhiteHouse on twitter) to light up in the colors of CHERUBS on April 19th...the International Day of Congenital Diaphragmatic Hernia Awareness.  We need to get 100,000 signatures in just 30 days to even be considered by the administration...so we have our work cut out for us.  Just go to www.cdhawarenessday.com to sign the petition.

We have a lot of fundraisers in the Chicago area leading up to the Chicago and Peoria parades on April 19th.  This year any money raised (individual donations and corporate sponsors) before April 19th will be split between Ann & Robert H. Lurie Children's Hospital of Chicago and +CHERUBS in the Chicago area.  In the Peoria area, the funds raised will be split with OSF Saint Francis Medical Center.

To sign up for either the Chicago or Peoria parades, please register via FirstGiving.  Once you sign-up, join either the Chicago or Peoria team.  You can also set up your own FirstGiving page to fundraise in your child's honor or memory.  We will be using the same shirt this year for all the parades around the country with 50% of the t-shirt proceeds being donated back to the respective local hospital.  You can purchase your t-shirt when you register via FirstGiving.  For more up to date information, see the Peoria Facebook event or Chicago Facebook event.  

Donations will also be accepted on April 19th at either parade.  If you are interested in making a corporate donation, sponsorship levels are listed on the FirstGiving page or you can email me at nrubenstein@cherubs-cdh.org.  You can get your company name on the back of the shirt that will be used for all US and Canadian events for as little as a $100 donation.  And for $200, you can include you literature in the Chicago Parade participant bag. 

I am also looking for a corporate sponsor for a fundraising program for as little as $500.  This program will be launched in Chicago but will have international exposure.  Email me for details: nrubenstein@cherubs-cdh.org

Other Chicago area fundraisers:

• +Smashburger Gives Back to CHERUBS on February 19 ==> Facebook event for more information
• Lou Malnati's Gives Back to CHERUBS on March 6 ==> Facebook event for more information
• Superdawg Drive-in Gives Back to CHERUBS from March 18-24 ==> Facebook event for more information
• +Chick-fil-A CDH Fundraiser in honor of Cherub Liam on April 19 ==> Facebook event for more information

  

CHERUBS 2012 Milestones and Accomplishments for Congenital Diaphragmatic Hernia

As we wrap up 2012 and welcome 2013, our charity would like to thank all of the members, donors and friends who make it possible for us to help families affected by Congenital Diaphragmatic Hernia.

We are very proud of our accomplishments this year and look forward to many more in the upcoming year!

CHERUBS 2012 Milestones and Accomplishments (so far):

  * New Executive Board of Directors
  * New Parent Advisory Board
  * New Medical Advisory Board
  * New Vice-President, Ashley Barry
  * New Secretary, Lauren Campbell
  * New Treasurer, Kelly Green-Krist
  * Senate Bill S.3396 Introduced
  * Parade of Cherubs on April 19th in Washington DC to Capitol Hill
  * Members met with the offices of over 25 Senators
  * April 19th CDH
  * Parades of Cherubs on April 19th in Chicago, Seattle, Portland, Denver, St. Louis, Peoria
  * UK Light up The Night on April 19th
  * First ever Virtual CDH Awareness Parade on April 19th  * 2012 CDH Conference in San Francisco
  * New CHERUBS Web Site
  * New Logo
  * New Facebook Forums Application created
  * $10,000 CDH Research Grant contest started (ends December 30th)
  * $10,000 CDH Research Grant awarded to ______________ on December 30th (by votes)
  * Another $10,000 CDH Research Grant awarded to ______________ on December 30th (already chosen)
  * First ever Facebook Grant Contest held by a CDH charity
  * Over 300 care packages sent to families through our CDH HOPE Totebag project
  * CDH families represented at the American Pediatric Surgical Association conference
  * Our 2012 National Children's Memorial Day tribute honored the memories over 1000 cherubs
  * Texas Get-Together
  * Ohio Picnic
  * UK Get-Together in Scotland
  * Chicago CDH Carnival  * Pennsylvania / NJ / Delaware Picnic
  * Denver Picnic
  * Indiana Get-Together
  * Washington Zoo Trip
  * Oregon members met with Senators
  * Oregon members represent CDH families at the opening of Randall Children's Hospital
  * Over 900 raffle tickets sold for the 50/50 CDH Research Raffle raising $9000 for Research
  * Over 10,000 Facebook Fans reached
  * Over 10,000 signatures reached on CDH Research Bill petition
  * Over 18,000 people reached in one post on Facebook
  * 2012 Silver Lining Newsletter Published
  * 2012 CDH Awareness Video
  * Day of 2012 CDH Awareness Video
  * Participated in televised Raleigh Christmas Parade
  * CHERUBS members in Claremont, NC Christmas Parade
  * CHERUBS members in Snoqualmie Days Parade
  * It's a Knock-Out UK Fundraiser
  * Masquerading Angels Ball
  * UK Formal Ball
  * CDH Awareness Calendar featuring over 1300 CDH patients
  * Save the Cherubs CDH Awareness Calendar
  * First CDH Awareness Calendar in the United Kingdom
  * Won Shane Co. charity contest
  * Won the JuJuBelle Facebook contest
  * Our CDH Awareness Ribbon included in St. Louis Cardinals Game to raise money for St. Louis hospital
  * Washington Mud Run Fundraiser
  * Enter Stage Left Fundraiser  * UK Fishing Competition Fundraiser
  * Rockin' for Aidan Fundraiser
  * CHERUBS joins Google+
  * CHERUBS joins Chirpify
  * CHERUBS joins Pinterest
  * CHERUBS joins Instagram  * CDH Fundraising Kits created
  * Cooking With Cherubs cookbook project begun
  * Participated in the San Francisco Marathon
  * Participated in the Boston Marathon
  * Participated in the Baltimore Marathon
  * Participated in the Great Human Race in Durham, NC
  * Participated in the Iron Girl all women's half Marathon in the Mid-Atlantic
  * Participated in the Baltimore, MD Metric Marathon
  * Participated in the High Cloud Snapple Half Marathon in Washington, DC
  * Save The Cherubs in the Silicon Valley
  * New Holiday Facebook Covers project started
  * Dozens of free CDH Awareness graphics made
  * New yellow CDH Awareness Bracelets created
  * 47 members of the Angel Club
  * Over 100 new Save the Cherubs posters created
  * Membership reaches over 4200 families in 54 states
  * CHERUBS moves to new office
  * 5 television interviews
  * Over 2 dozen newspaper articles
  * 1 magazine article
  * Moved to new office

Be sure to check out the main CHERUBS blog for more great pictures of our 2012 accomplishments.

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.

Donate to the Carnival Fund

Now you can donate to the CHERUBS Illinois Carnival Fund to help defray the expenses and fees incurred to put on the event.  Ultimately, the more we can defray all the costs to put on the event, the more we will be able to donate to CHERUBS in the end.  To donate, just click the "Donate" button to the right of this post.

As always, you can also donate directly to CHERUBS by using the "Donate" button at the top of this page.

Don't forget to take advantage of the pre-carnival discount ticket prices!

Tickets at the carnival will be $10 for 12 tickets or $1 per ticket.  But use coupon code = CHERUBS and you will get 15 tickets for the price of 12....3 FREE tickets.  Without the coupon code, the price for 15 tickets will be $12.50 pre-carnival.  Or you can purchase an unlimited 2 hour game pass (from 11-1) for just $25.00 when you use the same coupon code. Please note that the unlimited game pass cannot be shared (it is for a single person).  These are pre-carnival prices, so buy your tickets or game pass before October 14.  

All you have to do is click the "Buy Now" link to the right of this blog post to purchase your tickets.  You will be able to collect you pre-purchased tickets at the event on October 14. 

You must use Coupon code = CHERUBS to take advantage of this pre-carnival deal of 3 FREE tickets or the unlimited game pass.

CHERUBS Creates New Parent Advisory Board To Help Govern Charity

In 2012, we are completely restructuring CHERUBS to go from a small "mom and pop" charity that offers mostly support services to families to a much, much larger, more professional non-profit organization that can fund larger projects, fund more research, raise more awareness and provide more services to families.

One of the steps we are taking to do this is restructuring our Board into 3 new Boards;  Executive Board of Directors, Medical Advisory Board and Parent Advisory Board.

    Meet Our New 2012 CHERUBS Parent Advisory Board!

  

    The purpose of the Parent Advisory Board is to oversee all of our support services, help us to delegate responsibilities and fill volunteer positions, deal with member conflict, process new ideas, handle suggestions and complaints and be the professional "face" of CHERUBS in social media.

    This position has a 1 year term beginning annually on June 1st.  The first CPAB was appointed for 2012.  The first election will be held on May 1, 2013.  Members can serve up to 5 terms in a row if elected.  Members can run for reelection, nominate themselves or others, and it is up to each member whether or not to accept a nomination.  Our goal with elections is to keep active members on this Board and give the membership more of a say so in the leadership of our charity.

    All members of this Board will serve 1-5 years except for the Volunteer Coordinator, who will Co-Chair this Board for unlimited terms with a fellow 1-yr-term Co-Chair chosen annually by the Board of Directors.  The Co-Chairs are responsible for overseeing the duties of the Parent Advisory Board and Volunteers.  They will both report back to the Board of Directors quarterly.

    The Board of Directors will be the business end of CHERUBS.  The Parent Advisory Board will be the heart and soul of our CHERUBS team. This is a very important Board with very important roles that these members do not take lightly.

    You can send your comments, questions, concerns and other correspondance to the new Parent Advisory Board at cpab@cherubs-cdh.org.

To read the bios of all volunteers (including your Illinois Rep) on the new Parent Advisory Board, check out this Facebook post.

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 again...no 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