Donate to the Carnival Fund

Now you can donate to the CHERUBS Illinois Carnival Fund to help defray the expenses and fees incurred to put on the event.  Ultimately, the more we can defray all the costs to put on the event, the more we will be able to donate to CHERUBS in the end.  To donate, just click the "Donate" button to the right of this post.

As always, you can also donate directly to CHERUBS by using the "Donate" button at the top of this page.

Don't forget to take advantage of the pre-carnival discount ticket prices!

Tickets at the carnival will be $10 for 12 tickets or $1 per ticket.  But use coupon code = CHERUBS and you will get 15 tickets for the price of 12....3 FREE tickets.  Without the coupon code, the price for 15 tickets will be $12.50 pre-carnival.  Or you can purchase an unlimited 2 hour game pass (from 11-1) for just $25.00 when you use the same coupon code. Please note that the unlimited game pass cannot be shared (it is for a single person).  These are pre-carnival prices, so buy your tickets or game pass before October 14.  

All you have to do is click the "Buy Now" link to the right of this blog post to purchase your tickets.  You will be able to collect you pre-purchased tickets at the event on October 14. 

You must use Coupon code = CHERUBS to take advantage of this pre-carnival deal of 3 FREE tickets or the unlimited game pass.

Pre-Order Carnival Tickets and Get 3 FREE

The 1st Annual CHERUBS Kids Carnival is just over 1 month away.  And now you have an opportunity to pre-order tickets and get 3 tickets FREE in the process.

Tickets at the carnival will be $10 for 12 tickets or $1 per ticket.  But use coupon code = CHERUBS and you will get 15 tickets for the price of 12....3 FREE tickets.  Without the coupon code, the price for 15 tickets will be $12.50 pre-carnival.  Or you can purchase an unlimited 2 hour game pass for just $25.00 when you use the same coupon code. Please note that the unlimited game pass cannot be shared (it is for a single person).  These are pre-carnival prices, so buy your tickets or game pass before October 14. 

All you have to do is click the "Buy Now" link to the right of this blog post to purchase your tickets.  You will be able to collect you pre-purchased tickets at the event on October 14.

You must use Coupon code = CHERUBS to take advantage of this pre-carnival deal of 3 FREE tickets or the unlimited game pass.

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).  

A Call to Arms!!

Did that get your attention??  Okay...well I exaggerated a bit.  It's not really a call to arms but rather a call to volunteer.  Many of you may know that I wear a lot of hats in an effort to help CHERUBS.  I am currently the Illinois and Wisconsin State Rep and on the Awareness, Grant, and Welcome Committees.  I am also one of the Co-Chairs of the newly formed Parent Advisory Board.

So how can you help?  We can always use help on the committees I mentioned above.  But where we really need help (and I'm talking about Illinois and Wisconsin specifically here) is in the Hospital Angel role.  What is a Hospital Angel?  It is someone who has knowledge of a specific hospital and is willing (as needed) to speak to members about that hospital or possibly even visit someone with a child currently at that respective hospital.

This is an on-call position, so it does not require a lot of hours.  However, it is an extremely important role.  I think we all can remember all the questions swirling around our heads when we found out we were going to have a child with CDH.

But between Illinois and Wisconsin there are way too many hospitals for one person to cover.  Plus I only have experience with two hospitals with respect to my CDH-er.

I know just from the Chicago Parade of Cherubs on April 19, we had a dozen hospitals represented.  If you are interested in becoming a Hospital Angel or taking on any of the other important volunteer roles, please let me know.  Thanks for taking the time to consider volunteering.  CHERUBS is primarily a volunteer run organization.  So without our volunteers, we wouldn't be able to offer half the services currently being offered.

Here is a direct link to a brief description of the volunteer roles currently available.

 

CHERUBS Creates New Parent Advisory Board To Help Govern Charity

In 2012, we are completely restructuring CHERUBS to go from a small "mom and pop" charity that offers mostly support services to families to a much, much larger, more professional non-profit organization that can fund larger projects, fund more research, raise more awareness and provide more services to families.

One of the steps we are taking to do this is restructuring our Board into 3 new Boards;  Executive Board of Directors, Medical Advisory Board and Parent Advisory Board.

    Meet Our New 2012 CHERUBS Parent Advisory Board!

  

    The purpose of the Parent Advisory Board is to oversee all of our support services, help us to delegate responsibilities and fill volunteer positions, deal with member conflict, process new ideas, handle suggestions and complaints and be the professional "face" of CHERUBS in social media.

    This position has a 1 year term beginning annually on June 1st.  The first CPAB was appointed for 2012.  The first election will be held on May 1, 2013.  Members can serve up to 5 terms in a row if elected.  Members can run for reelection, nominate themselves or others, and it is up to each member whether or not to accept a nomination.  Our goal with elections is to keep active members on this Board and give the membership more of a say so in the leadership of our charity.

    All members of this Board will serve 1-5 years except for the Volunteer Coordinator, who will Co-Chair this Board for unlimited terms with a fellow 1-yr-term Co-Chair chosen annually by the Board of Directors.  The Co-Chairs are responsible for overseeing the duties of the Parent Advisory Board and Volunteers.  They will both report back to the Board of Directors quarterly.

    The Board of Directors will be the business end of CHERUBS.  The Parent Advisory Board will be the heart and soul of our CHERUBS team. This is a very important Board with very important roles that these members do not take lightly.

    You can send your comments, questions, concerns and other correspondance to the new Parent Advisory Board at cpab@cherubs-cdh.org.

To read the bios of all volunteers (including your Illinois Rep) on the new Parent Advisory Board, check out this Facebook post.