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”.

CHERUBS - Chicago Parade of Cherubs on April 19th!

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Chicago, IL Parade

    On Facebook - https://www.facebook.com/events/530087357016093/

    Register on Eventbrite - http://cdhawarenessday-2013chicago.eventbrite.com/

    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013

    50% of money raised will be donated to Lurie Children's Hospital of Chicago (formerly Children's Memorial) for CDH Research

    Contact Neil Rubenstein with any questions about this event at illinois@cherubs-cdh.org

CHERUBS - Congenital Diaphragmatic Hernia (CDH): Chicago Parade of Cherubs on April 19th!

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.

There's still time to vote: CHERUBS sponsors $10,000 Facebook Contest to Benefit CDH Research

Something very exciting is going on at +CHERUBS and we want YOU to be a part of it! Thanks to all of you wonderful members and fans for buying and selling raffle tickets we are ready to award a $10,000 CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH GRANT!!!! We could choose a hospital ourselves but we thought it would be more fun, and raise more awareness, to get your help! So the hospital with the most votes by December 30th will win $10,000 for CDH Research!!!!!!!!!!!!

Vote at https://www.facebook.com/questions/10151158907097006 

In the running are the following CDH labs and clinics: 

• Congenital Diaphragmatic Hernia (CDH) Genetic Research Study
• DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab 
• St. Louis Fetal Care Institute 
• Baylor College of Medicine CDH Genetic Lab 
• The Center for Fetal Diagnosis and Treatment at CHOP 
• UCSF Fetal Treatment Center 
• Shands at the University of Florida CDH Clinic 
• Boston Children's Hospital CDH Clinic 

For more information:

CHERUBS - Congenital Diaphragmatic Hernia (CDH): CHERUBS sponsors $10,000 Facebook Contest to Benefit CDH Research

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