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

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...