Huge Day for CDH Awareness!!

You may or may not have heard but on July 18, Senator Jefferson Sessions (R-AL) formally introduced the Congenital Diaphragmatic Hernia Research Bill, co-sponsored by Senator Benjamin Cardin (D-MD).  This is the $50,000,000 medical research bill that CHERUBS has been talking about for some time now.

We have a long road to try to push this bill through, but just so everyone is aware....CHERUBS receives no money if this bill becomes law.  This bill would just appropriate funds that medical institutions can petition for to help fund research.  This will help the entire CDH community around the world.  This is a great thing for all families currently affected and those who will be affected by CDH in the future.

If you think $50,000,000 is a lot of money, let me put it into perspective with some "quick and dirty" math:

1600 babies affected by CDH per year in the US

Let's say only 50% have extended stays (over 1 month) in the NICU = 800 babies

An extended stay can easily cost $1,000,000 (and that is being extremely conservative)

This would total  $800,000,000 in one year...and this is an extremely low number and doesn't account for any of the other 800 babies diagnosed with CDH in a given year.  We all know that even a baby that unfortunately looses his/her battle with CDH can fight for 1-2 months and can incur substantial medical bills.

This cost doesn't take into consideration any of the non-medical bills and expenses associated with an extended stay of a family member in the hospital.  So spending $50,000,000 on research that could substantially reduce the $800,000,000 in medical bills in one year alone...seems like a pretty good trade-off to me.

So what's next?  You can follow the progress of the bill as it travels through committee, etc.

More importantly, you can write you Congressmen.  Let them know that you support this bill.  That it is important to you and your family.  Here's a link to help you look up your Congressmen along with a letter template that you can use to craft a letter to send/email to you senators and representative.  You can even write letters to all the members of the respective committees reviewing the bill to show your support.

This is a huge opportunity for us to not only raise awareness of CDH but also finally get much needed funding to understand the cause (and hopefully prevent it in the future).