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.

Did you know??

Did you know that the next CHERUBS Illinois get-together is already on the calendar?

• July 14 at Ravinia Park in Highland Park, Illinois for a kids concert.  Ralph's World is playing.  I've seen him a couple times now...and the kids will love it.  Tickets are only $5 for lawn seats.  If you've never been to Ravinia, it's well worth it.  Here's the Facebook event with more information and a video clip below:

• Live in Michigan, Indiana, or Wisconsin??  We'd love for you to join us too!

Did you know that CHERUBS is selling raffle tickets to raise money for CDH research?

• Tickets are only $20 and the winner will receive half the money raised.
• Our goal is to sell 1,000 tickets.  That means the winner will receive $10,000 with the remaining $10,000 being donated to a hospital for additional CDH research
• You can reach out to me to purchase tickets or buy them direct by following this link: http://cdhraffle.eventbrite.com/

A challenge -- that's hard to refuse

So a couple of the other State reps and I decided to have a little, friendly contest.  Which state can donate the most items to the CHERUBS Totebag Project?   What does this mean?

Well you may or may not know that CHERUBS sends totebage to new members who are expecting a CDH child to provide invaluable information and items that will help for the often lengthy stay in the hospital.  This project is often under-funded and frequently overlooked.  That means deserving members don't always get totebags.

What are the rules for the challenge? 

1. Spend no more than $5 (not including shipping)
2. Items must be received by CHERUBS by Father's Day (if in the Chicago area--I am happy to bundle your items with mine and send in one big package.

Common Questions:

• What is the CHERUBS mailing address: 
• 3650 Rogers Rd. #290, Wake Forest, NC, 27587
• What items are needed for the totebags:  
• Lotions, preemie onsies, tissues...here's a link to a complete list
• Gift cards to national grocery stores and restaurants are great too
• You can even donate a gift card to CHERUBS to purchase the needed supplies
• Are there any other ways to donate?
• Yes, you can donate via the CHERUBS website and designate the funds for the Totebag Challenge

That's pretty much it...but I'm from Chicago (and we Chicagoans don't always play by the rules), so I am throwing a twist into the mix:

If you donate $5 worth of items to CHERUBS, I will give you $25 off a party from Creative Celebrations*.  For anyone who doesn't know already, Creative Celebrations is a children's entertainment company that my wife and I started back in 2000.  

*Must post "I donated to the CHERUBS Tote Bag Project" on the Creative Celebrations Facebook fanpage to qualify.  Cannot be combined with any other discount and valid on theme parties offered by Creative Celebrations only.

2012 CDH Raffle for Research

Who's interested in winning $10,000 and raising $10,000 for Congenital Diaphragmatic Hernia Research? CHERUBS 2012 Summer Raffle for Research is underway! $20 per ticket in this 50/50 raffle.

Our goal is to sell 1000 tickets by October 15th with the drawing to be held during the CHERUBS Masquerading Angels Ball on October 20th!

The 3 people who sell the most tickets will each win 2 tickets to the Angel Ball! Make sure your name is included as "seller" in the purchase!

How Do I Buy A Ticket?

Purchase your ticket here through PayPal via Eventbrite or send us a check to CHERUBS at 3650 Rogers Rd #290, Wake Forest, NC 27587. Make sure to put "raffle" in the check memo!
By July 1st we will mail you a raffle ticket by postal mail with your ticket number...

CHERUBS - Congenital Diaphragmatic Hernia (CDH): 2012 CDH Raffle for Research

So what's next for CHERUBS Illinois??

So what is next for the CHERUBS Illinois members??  That's a great question.  I am still pretty psyched from our successful April 19th Chicago Parade of Cherubs, so I think it's only fitting to begin thinking about what's next...

I have a number of ideas, and a few Illinois members have already mentioned a couple of their ideas to me.  But I'd like to hear your thoughts.  I get the feeling that everyone is itching to have another get-together, so we can all socialize a bit more.  

Please add a comment or two to let me know what ideas you have for fundraisers, social gatherings, or anything in between.  

There are no bad ideas...just ideas that are left unsaid.

Now that the Day of CDH Awareness has past...

The first word that comes to mind is "WOW!"


There were thousands of websites that picked up the CHERUBS Press Release, countless articles written, a handful of TV stations picked up the story, at least 17 states (and 4 cities) issued Proclamations, and hundreds of people affected by CDH marched in cities all around the country.  In fact, we were able to obtain a Proclamation from Illinois and Wisconsin along with the cities of Chicago, Peoria, and the village of Wheeling to support our efforts here in Chicago (and in Illinois). 


Our Parade of Cherubs in Chicago had over 50 people march around Children's Memorial Hospital to help raise awareness of congenital diaphragmatic hernia.  We had CDH angels represented, babies diagnosed in utero, children ranging from 1-5 years old, and even a 17 year old survivor.  We had parents, rainbow siblings, aunts, uncles, friends, siblings, cousins, and even a doctor.  We had three states represented.  And if I had asked everyone which hospital they received treatment at...I probably would have received at least 8-10 different answers.  


We all came together to help raise awareness of this birth defect that affects 1 in every 2500 births.  However, many attendees had never met another family affected by CDH before.  As many of the families started to chat to get to know one another better...I found myself along with many others responding to questions with the same answer, "we just don't know....that's why we need research."  I honestly felt bad....I had no answers.  But then again...no one does...unfortunately. 


We (as a CHERUBS family) collectively did a tremendous amount to raise awareness this year.  Those who participated in the Washington D.C. were actually able to meet with their respective Senators to show support for the $50,000,000 CDH Research Bill.  However, we must continue to raise awareness everyday if we can ever hope for research dollars to get allocated to find a cause/cure for CDH.  We have gained some amazing momentum this year....let's keep it up!


Thanks to our sponsors who helped make the Chicago Parade of Cherubs a success:


Abigail Harenberg Photographer - for taking some amazing pictures at the event
BENT FORK BAKERY - for donating yummy cupcakes
The Bleeding Heart Bakery - for donating additional cupcakes
Clowning Around Entertainment/ Celebration Authority - for donating helium for our balloon launch
Sugar Beez - for making the awesome CHERUBS ribbon sugar cookies
Noelle Rudisill - for making the CHERUBS magnets that everyone loves so much
Children's Memorial Hospital - Circle of Friends - for agreeing to work with myself and CHERUBS to raise CDH awareness