Groupon Grassroots Update & Other Breaking News!

We did amazing with the Groupon Grassroots fundraiser!  Because of your support, we raised over $3,300 towards the HOPE Totebag program.  100% of the money raised goes directly to CHERUBS for this important program.  Thank you for making this fundraiser (the first of it's kind for CHERUBS) such a success.

Did you know that CHERUBS is offering a scholarship towards college for graduating seniors?  There's still time to apply.  The deadline is June 24th, so get your application in soon!

Did you watch the WGN news on Monday, June 17th?  The CHERUBS IL/WI Representative and his family were featured in a cover story which talked about CDH, CHERUBS, and their 2nd child (due in September) also diagnosed with CDH.

We're in the home stretch of the Groupon Grassroots Totebag Fundraiser

Just in case you haven't heard, CHERUBS has partnered with Groupon Grassroots to launch a fundraiser to help support the HOPE Totebag program.  These totebags are sent to CHERUBS members who are expecting a child with CDH or with one currently in the NICU.  It includes lots of items and information to help with an extended hospital stay (which unfortunately is very common among children who have CDH).

This fundraiser launched last Thursday (5/30) and runs until Sunday, June 9.  The awesome thing about this fundraiser is that Groupon actually absorbs all fees and transactions costs, so 100% of the money raised goes directly to CHERUBS.   100%!!

Donations can be made in increments of $10 with every 5 donations covering the cost of one bag.  There aren't many easier ways to donate to such a worthwhile cause where 100% of the money raised goes to the chosen charity.

Why am I so passionate about this fundraiser?  Here's a blog post I wrote for my friends at RockScar Love called "Death, you messed with the wrong dad AGAIN"

Please consider making a donation.  Thank you very much.

Here is the link to donate:  http://www.groupon.com/deals/cherubs

President Dawn Torrence Williamson, Represents CHERUBS at International CDH Workshop in Rotterdam

This week CHERUBS President and Founder, Dawn Torrence Williamson, will be speaking to CDH surgeons and researchers at the International CDH Workshop at Sophia Children's Hospital in Rotterdam, Holland.   An event to showcase the latest in Congenital Diaphragmatic Hernia Research and results from the CDH Study Group, this is a wonderful opportunity for the world's largest CDH charity to share our information and services and to learn how we can better work with researchers worldwide


CHERUBS - Congenital Diaphragmatic Hernia (CDH): President Dawn Torrence Williamson, Represents CHERUBS at International CDH Workshop in Rotterdam

CHERUBS 2013 CDH Scholarships

Two $1000 scholarships will be awarded this year in memory of cherub Oz Kidd-Ward.

Download the application at http://www.cherubs-cdh.org/CHERUBS2013ScholarshipApplication.pdf

Applications are accepted each year between March 1 and June 24th and must be accompanied by the following applicable items:

·      High school transcript(s) or Recent Report Card with GPA

·      College Acceptance Letter(s)

·      Two letters of recommendation.  Letters must be dated within the last three months.

Rewards are granted on merit without regard to race, religion, creed, sex, national origin or disability status.  All applicants must be a current member of CHERUBS or have a parent that is a registered member of CHERUBS.  The CHERUBS CDH Scholarship is not available to children of members on the CHERUBS Executive Board or the CHERUBS Parent Advisory Board (CPAB).  Winner(s) will be announced at the International Congenital Diaphragmatic Hernia Conference on Wednesday, July 10, 2013, in Boston, MA

For more information:
CHERUBS - Congenital Diaphragmatic Hernia (CDH): CHERUBS 2013 CDH Scholarships

CHERUBS Partners with Groupon Grassroots for the HOPE Totebag Initiative

CHERUBS Partners with Groupon Grassroots for the HOPE Totebag Initiative

to provide totebag care packages to families either expecting a child with a congenital diaphragmatic hernia (CDH) or currently have a child in the hospital with CDH.

Chicago, IL – Today CHERUBS and Groupon Grassroots (http://grassroots.groupon.com), the philanthropic arm of Groupon, announce the launch of a local campaign to raise much needed funds to support the HOPE Totebag project.

The HOPE Totebag campaign will be available on the Chicago, IL Groupon Grassroots page beginning on 30, May and running through 9, June. Utilizing Groupon Grassroots’ collective action model, Groupon subscribers can pledge support for the Hope Totebag initiative in increments of $10, with each $50 covering the cost of the totebag care package for 1 family. 

“We’re excited to leverage the collective action model of Groupon Grassroots to raise support for the HOPE Totebag project,” said Neil Rubenstein, Illinois Rep for CHERUBS. “We look forward to creating new awareness for CHERUBS as one of the local organizations in Chicago to be featured on Groupon Grassroots.”

One hundred percent of the Groupon Grassroots campaign proceeds will be used to provide much needed funding to keep this project going.  It costs CHERUBS approximately $50 in product and postage to mail each totebag.  Typically, CHERUBS mails about 30 totebags per month.  The totebags contains items such as blankets, disposable camera, gas cards, and other welcome items that parents often don’t think about before a lengthy NICU stay.  CDH babies can be hospitalized in the NICU for 6 months or longer.

CHERUBS currently has over 4,200 members in all 50 states and in over 60 countries.  1 in every 2500 pregnancies results in a CDH diagnosis.  Unfortunately, there are over 52,000 children diagnosed with CDH every year around the world.  There is only a 50% survival rate for children born with this birth defect.  

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About CHERUBS

CHERUBS is the world's first, oldest, and largest CDH non-profit organization.  CHERUBS is truly a grassroots organization - CDH families creating something out of nothing when there was no other CDH group, information and services in 1995.  CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information.  For more information on CHERUBS, visit http://www.cherubs-cdh.org. 

About Groupon Grassroots

Groupon Grassroots, launched in July 2010 in Chicago as G-Team, features local campaigns nationwide, enabling Groupon followers to do good, have fun, and make a real impact in their communities. Groupon Grassroots uses collective action to gather support for worthwhile causes and produce tangible results for local organizations. To learn more about Groupon Grassroots and how to become a featured organization, visit http://grassroots.groupon.com. To subscribe to Groupon, visit http://www.groupon.com.

Press Contacts:

CHERUBS Neil Rubenstein 847.530.6070 illinois@cherubs-cdh.org

Groupon Erin Yeager 312.999.3434 eyeager@groupon.com

U.S. House of Representatives Introduces Resolution for CDH Awareness Month

H. Res 144 that was introduced this week in the United States House of Representatives to make April, 2013 "National Congenital Diaphragmatic Hernia Awareness Month" by Rep. Martha Roby (R-AL) and co-sponsored by Rep. George Holding (R-NC). 

A companion bill was passed unanimously in the Senate on March 20, 2013 - S. Res. 85 which was sponsored by Senator Jeff Sessions (R-AL) and co-sponsored by Senator Ben Cardin (D-MD).

Congenital Diaphragmatic Hernia (CDH) affects 1600 babies a year in the United States, taking the lives of 800 children.  CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. The cause is unknown.  There is no awareness and very little research funding.  

CHERUBS - Congenital Diaphragmatic Hernia (CDH): U.S. House of Representatives Introduces Resolution for CDH Awareness Month

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

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