CHERUBS Fundraiser - First Ever Original Lullaby Written Just for CHERUBS!

For the first time, CHERUBS has a lullaby written with our cherubs in mind.  A good friend of mine offered to compose and perform an original lullaby for CHERUBS.

The lullaby is amazing and is called "A Fighter's Lullaby".  This is the official announcement of the first ever "A Fighter's Lullaby" CHERUBS fundraiser.

You can purchase the song for only $1.89.  However, you have the opportunity to "pay" more if you would like just by increasing the purchase price at time of checkout.

After PayPal processing fees, all money raised will be donated to either the Family Support Fund at CHERUBS or CDH Research or both depending on how much we raise.

Here's is a sample of this amazing lullaby by Ross Crean (a local Chicago musician).

 <== click here to purchase/donate
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Here's a short note from the composer/artist :

I first became aware of CDH when my friends Neil and Amy Rubenstein's son, Aidan, was diagnosed with the birth defect. Like a great many people, I had no knowledge that something like CDH existed until it happened to someone I knew. Raising awareness is so crucial to helping research, detect, and even one day prevent this condition.

I wrote "A Fighter's Lullaby" with two intentions. ONE, to compose a lullaby to raise money for the CHERUBS organization, and TWO, to send a message of love and support for those heroes who deal every day with the effects of CDH. It is my hope that this song will serve as a message of solace and encouragement, not only to the children who are diagnosed, but also to the parents who soldier bravely through the losses and hardships that it brings. To those who have lost children to CDH, and to those who continue to fight it: may this song be your light in the present darkness, and remind you that even the most difficult struggle always reaches an end. Stay strong!

Copyright 2013 Ross Crean/Knight & Thorne Music/ASCAP. All Rights Reserved.

Interested in "purchasing" this song? Just use the Add to Cart button below.  And remember you are more than welcome to donate more than $1.89 for the lullaby.


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Once you purchase the song, you will have the opportunity to download it right away.  You should also receive a link via email with instruction for downloading.

CHERUBS Raffle for Research

Last December we held a Facebook contest and you voted for your favorite Research Center to get a $10,000 CDH Research Grant. We were able to give away 2 grants for $10,000 each thanks to all your help selling 50/50 CDH Raffle tickets and thanks to 1 determined family who raised $10,000 in memory of their daughter! $10,000 went to The Center for Fetal Diagnosis and Treatment at CHOP and $10,000 went to DHREAMS Research Study (Congenital Diaphragmatic Hernia).

THIS YEAR:

Our goal is to sell 1000 more 50/50 CDH Raffle tickets to raise another $10,000 and to work together to raise an additional $15,000 through fundraisers and firstgiving pages. 

Think we can do it? Want to give $25,000 in CDH Research Grants this December? We sure do!!!

HOW YOU CAN HELP:

1. Purchase tickets at http://2014cdhresearchraffleeventbrite.com/

2. Sell paper tickets by e-mailing us your name and address to research@cdhsupport.org

3. Hold a fundraiser by talking to our Fundraising Coordinator Melissa Larrison at mlarrison@cherubs-cdh.org

4. Create a Firstgiving Page in honor/memory of your cherub at https://www.firstgiving.com/10125/cherubs-2013-cdh-research-fund-drive

It's not hard to help! We had several families sell over 50 tickets each and we have had 2 families raise over $10,000 on Firstgiving and one who raised $25,000! If all of us work together on this we can far exceed our goal and raise a lot of money for CDH Research!

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

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.

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 - Congenital Diaphragmatic Hernia (CDH): What does CHERUBS do for CDH Families?

Here's a great list of "some" of the services that CHERUBS provides to families affected by CDH from the CHERUBS blog:

CHERUBS - Congenital Diaphragmatic Hernia (CDH): What does CHERUBS do for CDH Families?

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...

  

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).