April 19th 2013 Chicago Parade of Cherubs Press Release

SUMMARY:
Chicago, IL - CHERUBS, a non-profit organization, worked with Senators Jefferson Sessions (R-AL) and Benjamin Cardin (D-MD) to gain national awareness for the birth defect, Congenital Diaphragmatic Hernia, through Senate  Resolution 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

A local “Parade of Cherubs” awareness event will be held on April 19th to benefit national charity CHERUBS and research at Lurie Children's Hospital of Chicago.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity, and preventing lung growth. It affects 1 in every 2,500 babies, representing approximately 1,600 babies in the United States each year, half of which do not survive.

PRESS RELEASE: Grassroots Parent Group Works With Senator Sessions to Raise Awareness with Unanimous Senate Passing of April, 2013 “Congenital Diaphragmatic Hernia Month” Resolution

FOR IMMEDIATE RELEASE
Media Contact:
Neil Rubenstein
847.530.6070
illinois@cherubs-cdh.org

Chicago, IL (April 8, 2013) – On March 26, 2013, U.S. Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD) introduced Senate Resolution 85.

U.S. Sen. Jeff Sessions (R-AL), along with his colleague Sen. Ben Cardin (D-MD), issued the following statement on March 22nd after the unanimous approval of Senate Resolution 85, designating April 2013 as Congenital Diaphragmatic Hernia (CDH) Month:

“I am pleased that the Senate has unanimously declared April 2013 as National Congenital Diaphragmatic Hernia Awareness month. By joining together, we can help raise awareness of this serious birth defect. Early detection, good prenatal care, and awareness are vital for the survival, and healthy future, of the children born with this defect.”

On Friday, April 19th, U.S. Senator Jeff Sessions (R-AL) will meet with families affected by Congenital Diaphragmatic Hernia who are participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of the deadly birth defect. Sen. Sessions’ three-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.

Families will also meet with members of the House of Representatives on April 18th, which will be followed by a reception that evening on Capitol Hill to celebrate the passing of the Resolution in the Senate.

“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.” said Senator Sessions at last year’s event in Washington, DC.

CDH occurs when the diaphragm fails to form or to close totally and the opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.

The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 11:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.

“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Not only are we celebrating the passing of this very important Senate Resolution for CDH awareness but our members have been gathering Proclamations from Governors and Mayors around the country as well to help raise awareness on a local level.”

CHERUBS is working with Ann & Robert H. Lurie Children's Hospital of Chicago to put on the Chicago Parade of Cherubs on April 19th. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizing the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Childerley Park in Wheeling to pay respect to all those CHERUBS lost. Then they will walk 2.5 miles through Wheeling and Buffalo Grove to help raise awareness of CDH. Close to 70 people (from four states) are expected to participate in this awareness & fundraising event.

“Join us after the parade at Lou Malnati's in Buffalo Grove for lunch and help us Pack Potbelly's in Wheeling to raise additional money towards CDH research (from 3pm - 6 pm on April 19th as well)” invites Rubenstein.

50% of the money raised will stay local and be donated to Lurie Children's Hospital of Chicago.

Several cities across the U.S. are also hosting “Parades of CHERUBS” on the same weekend including, Washington DC, New York, Chicago, Denver, Seattle, Dallas, Peoria, Portland, Salt Lake City, Phoenix, St. Louis and Philadelphia. In addition to the parades, there will be a CDH Baseball Night with the Las Vegas 51’s, a Sky Dive Fundraiser in Shropshire, UK, and both the CN Tower in Toronto, Ontario, Canada and City Hall in Dublin, Ireland, will be lighting up for CDH Awareness. Many families will also be holding fundraisers and awareness events in honor or in memory of their children born with CDH. A virtual Parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos.

April 19th is recognized as the International Day of Congenital Diaphragmatic Hernia Awareness by families in 60 countries.

Shands for Children at the University of Florida in Gainesville, DHREAMS CDH Genetic Lab at Columbia Presbyterian Hospital, the Congenital Diaphragmatic Hernia (CDH) Genetic Research Study at Massachusetts General, the St. Louis Fetal Care Institute, and The Center for Fetal Diagnosis and Treatment at CHOP have all been integral in raising CDH Awareness this year by sponsoring or assisting with Parades of CHERUBS at their respective hospitals.

A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/cdhsupport.

If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit
www.cdhawarenessday.org

###
Additional Information:
Senate Resolution - http://www.govtrack.us/congress/bills/113/sres85
CHERUBS – http://www.cdhawarenessday.org/

Everything you need to know...

...About the Chicago Parade of Cherubs on April 19th:

1. Deadline for purchasing your shirts is March 31st if you want to receive it at the parade.
• You can purchase shirts via Eventbrite or FirstGiving 
2. You can register using the same links above up until the day of the event.  If you use FirstGiving to register, please join the Chicago team (after you register).
3. If you are planning to attend the Lou Malnatis (all you eat pizza/soda) lunch after the parade, I need to know ASAP.  Adults are $12 and children are $7.50.  If we don't have enough people signed up, I have to cancel the reserved room.  We can still do lunch, but it won't be all you can eat.  I need to need by March 31st if you are planning to come to the lunch.

Day of Schedule <== click link to download schedule

11:00 a.m. – Arrive at Childerley Park  – 506 McHenry Rd , Wheeling, IL

11:15 a.m. – Moment of silence to remember those CHERUBS lost

11:20 a.m. – Balloon launch

11:30 a.m. – Wrap up pictures and begin march/parade (2.5 miles)

12:30 p.m. – Finish march back at Childerley Park

1:00 p.m. – Drive to Lou Malnati’s (about ½ mile from park) for Lunch  

85 South Buffalo Grove Road ($12 per adult, $7.50 per child)

2:00 p.m. – Good-byes??

3:00 p.m. – 6:00p.m. – Pack Potbelly’s Fundraiser - 1520 E Lake Cook Rd, Wheeling (no flyer needed) – 25% of sales donated to CHERUBS

CHERUBS - Chicago Parade of Cherubs on April 19th!

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Chicago, IL Parade

    On Facebook - https://www.facebook.com/events/530087357016093/

    Register on Eventbrite - http://cdhawarenessday-2013chicago.eventbrite.com/

    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013

    50% of money raised will be donated to Lurie Children's Hospital of Chicago (formerly Children's Memorial) for CDH Research

    Contact Neil Rubenstein with any questions about this event at illinois@cherubs-cdh.org

CHERUBS - Congenital Diaphragmatic Hernia (CDH): Chicago Parade of Cherubs on April 19th!

So much CDH Awareness Going On!

There so much going on in Illinois with respect to CDH awareness and around the world, I almost don't know where to start.

But first and foremost is our petition to get the +The White House (@WhiteHouse on twitter) to light up in the colors of CHERUBS on April 19th...the International Day of Congenital Diaphragmatic Hernia Awareness.  We need to get 100,000 signatures in just 30 days to even be considered by the administration...so we have our work cut out for us.  Just go to www.cdhawarenessday.com to sign the petition.

We have a lot of fundraisers in the Chicago area leading up to the Chicago and Peoria parades on April 19th.  This year any money raised (individual donations and corporate sponsors) before April 19th will be split between Ann & Robert H. Lurie Children's Hospital of Chicago and +CHERUBS in the Chicago area.  In the Peoria area, the funds raised will be split with OSF Saint Francis Medical Center.

To sign up for either the Chicago or Peoria parades, please register via FirstGiving.  Once you sign-up, join either the Chicago or Peoria team.  You can also set up your own FirstGiving page to fundraise in your child's honor or memory.  We will be using the same shirt this year for all the parades around the country with 50% of the t-shirt proceeds being donated back to the respective local hospital.  You can purchase your t-shirt when you register via FirstGiving.  For more up to date information, see the Peoria Facebook event or Chicago Facebook event.  

Donations will also be accepted on April 19th at either parade.  If you are interested in making a corporate donation, sponsorship levels are listed on the FirstGiving page or you can email me at nrubenstein@cherubs-cdh.org.  You can get your company name on the back of the shirt that will be used for all US and Canadian events for as little as a $100 donation.  And for $200, you can include you literature in the Chicago Parade participant bag. 

I am also looking for a corporate sponsor for a fundraising program for as little as $500.  This program will be launched in Chicago but will have international exposure.  Email me for details: nrubenstein@cherubs-cdh.org

Other Chicago area fundraisers:

• +Smashburger Gives Back to CHERUBS on February 19 ==> Facebook event for more information
• Lou Malnati's Gives Back to CHERUBS on March 6 ==> Facebook event for more information
• Superdawg Drive-in Gives Back to CHERUBS from March 18-24 ==> Facebook event for more information
• +Chick-fil-A CDH Fundraiser in honor of Cherub Liam on April 19 ==> Facebook event for more information

  

Just the facts....about the CHERUBS Kids Carnival

Hopefully this will answer any and all questions you may have regarding the CHERUBS Kids Carnival this Sunday.

Date: October 14
Time:  11 am - 2 pm
Location: Recreation Center of Highland Park located at 1207 Park Ave. W, Highland Park, Illinois
Admission: FREE - there is no entrance fee but tickets will be sold to play the games, etc.
Additional Venue information:    Plenty of parking is available onsite.  This is an indoor event that will take place in one of the basketball courts with food and redemption in a separate room.

What kinds of activities will you have at the carnival?  We will have 20+ carnival games, balloon twisting by Aunt Nora, face painting, KidSnips will be doing hair, TAT4u will be offering airbrush tattoos, a bounce house, trivia games by Loren of Fun, Fun, Fun DJ's, and music & dancing games with Mindy from the Rock & Roll Arts Academy.  

Are discount tickets available?  Until Friday, tickets are being sold on the CHERUBS Illinois blog at a discount when you use coupon code = CHERUBS.  Just click the drop down menu on the right hand side of this blog to purchase your discounted tickets.  For a very limited time, you can purchase 15 tickets for $10 (with coupon code).  Normal price the day-of the carnival will be $10 for 12 tickets.

Any other way to get more Free tickets?  Yes, check into the CHERUBS Kids Carnival on foursquare and get 2 more FREE tickets (when you spend at least $10 on tickets).  Just show your check-in at the ticket booth to claim your 2 FREE tickets.  Only 2 FREE tickets per family.

Is there an unlimited game pass available? Absolutely.  For $25, you can purchase an unlimited 2 hour game pass.  The pass is valid for 2 hours from time of purchase (or until 1:30 p.m whichever is earlier).  The pass is valid for all carnival games and the bounce house.  Pass is not valid for face painting, tattoos, food, raffle, etc.

How much does everything "cost"?  

• All carnival games will cost 1 ticket
• Bounce house will cost 2 tickets
• Small face paint (arm, cheek, etc.) will cost 1 ticket and a full face paint will cost 3 tickets
• Airbrush tattoo will cost 1 ticket and so will a balloon animal
• KidSnips makeovers will cost 
• 1 ticket for temporary hair color and/or faux mohawk
• 2 tickets for an awesome braid
• 4 tickets for a braided hair wrap with colored string
• Trivia games are FREE (and we have some great pizes to give away)
• Highland Pop popcorn will cost 2 tickets
• Cotton candy will cost 2 tickets
• Vienna hot dog lunch (including soda/water, chips and a pickle) will cost 4 tickets
• Sugar Beez cookies will be 1 ticket and Spunky Dunkers donuts will cost 2 tickets
• Carnival tickets will also be used to participate in the silent raffle for amazing prizes

What kinds of prizes are available in the silent raffle? Too many to list right now...but great stuff from the Chicago Sky, Bulls, Boomers, Wolves, Lynfred Winery, Wildfire, Creative Celebrations, Rock & Roll Academy, Embraced, Fab Band, Sprinkle with Love, The Hungry Monkey, Panera Bread, Noodles & Co., Sports Clips, The Best Salon, Make-a-Messterpiece, and lots more!!  

Anything else? We will also be selling 50/50 Raffle for Research tickets for $20 per ticket.  50% of the sales go towards CDH research and the other 50% of ticket sales go to the winner.  The goal is to sell 1,000 tickets so $10,000 can be donated towards research and the winner will receive the remaining $10,000.  

What forms of payment will be accepted at the carnival?  You can pay for carnival tickets with cash, check (made out to CHERUBS), or credit card.  Please note that 50/50 Raffle for Research tickets can only be purchased with cash or check.  

Will donations be accepted?  Of course!  You can make additional donation checks out to CHERUBS or just tell us to "keep the change" to make an additional donation.  You can also make a donation to CHERUBS or to the Carnival Fund right here on the CHERUBS Illinois blog using your credit card.

See you on Sunday!!

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.

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.

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

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

April 19th is almost here...

So the International Day of CDH Awareness is quickly approaching on April 19.  How are you planning to increase awareness of congenital diaphragmatic hernia??

Here are some quick and easy things you can do to show your support:

1. Participate in the Chicago Parade of Cherubs at Children's Memorial Hospital or any other local event.
2. Join and post pictures, videos, etc. in the Virtual Parade of Cherubs on Facebook, Twitter, Pinterest, and/or Google+.  For information on how to participate ask me or see this Facebook note.
3. Donate a tweet per day to CHERUBS via JustCoz.org.  This great website makes it easy to show your support by signing up one time (and forgetting about it).
4. Use the hashtag #SavetheCHERUBS on Twitter, Google+, and Foursquare all day on April 19th.
5. Write your Congressman to let them know you support the $50,000,000 CDH Research Bill.
6. Sign the CDH Research Bill petition.
7. Add a twibbon to your profile picture on Facebook and Twitter.
8. Write your local paper or community website.  Let them know your story.
9. Ask your Governor, Mayor, Village President, etc. for a Proclamation for the Day of CDH Awareness on April 19th.
10. Read the CNN iReport and post a comment. 
11. Hold a mini-march are your child's school
12. Tell everyone you meet your story!

I'm sure there are others...but this should get your started.  Feel free to comment with other ideas.  

CHERUBS - Congenital Diaphragmatic Hernia (CDH): Governor of Illinois Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness

CHERUBS - Congenital Diaphragmatic Hernia (CDH): Governor of Illinois Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness.

We also have a Proclamation from the Mayor of the city of Chicago!

April 19th Parade of Cherubs Illinois Press Release

PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

FOR IMMEDIATE RELEASE

Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com

Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

WAKE FOREST, NC (April 9, 2012) – On Thursday, April 19, U.S. Sen. Jeff Sessions
(R-AL) will meet with over 250 people participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of a birth defect called congenital diaphragmatic hernia (CDH). Sen. Sessions’ two-year old grandson, Jim Beau, is a CDH survivor.
In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions
is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.

CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or
to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600
babies in the United States each year. It is as common as cystic fibrosis and spina
bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.

“CDH awareness and research is very important to me especially because my
grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is
a life threatening birth defect that not many people have heard about. Only 50 percent
of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this
 year.”

The parade has been organized through CHERUBS, a North-Carolina based
grassroots nonprofit organization started by Dawn Williamson whose son, Shane,
died in 1999 at the age of six from CDH complications. Children donned in wings
will begin the three-mile walk at 10:00 a.m. at the Lincoln Memorial; they will travel
past the Washington Monument and the White House, and conclude at the U.S. 
Capitol Building.

Massachusetts General's CDH Genetic Study Lab will have representatives walking
in the parade. During their visit to Washington they will take blood samples from 
relatives of CDH victims for genetic research.

“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Families from all corners of the country plan to participate in the parade, and we expect the number to grow as we get closer to the event.”

Several other cities across the U.S. are hosting a cherubs parade on the same day including, Chicago and Peoria, Ill.; Denver; Portland, Ore.; Seattle; and St. Louis. The St. Louis Fetal Treatment Institute, known for conducting in utero procedures on CDH babies, has been an integral part of organizing their local event. There will also be a national candle lighting in the U.K.

CHERUBS is working with Children's Memorial Hospital to put on the Chicago Parade of Cherubs.  The Illinois Representative for CHERUBS, Neil Rubenstein, is organizinng the Chicago Parade.  Starting at 11:00 a.m., participants will take part in a balloon launch at Oz Park to pay respect to all those Cherubs lost.  Then they will be walk 1.2 miles by the hospital and the Ronald McDonald House (which so many CDH families frequent during their child's often long stay at the hospital).  Close to 70 people (from three states) are expected to participate in this awareness event.

The Peoria Parade of Cherubs takes place on April 22, 2012 in Glen Oak Park beginning 
at 2:00 pm. The event was organized by Kristin Aigner and Sarah Polich. Kristin is an RN 
in the NICU and coordinates CDH Follow up Clinic at OSF St Francis Medical Center and 
is the sister of Christopher, who was born with CDH in 1973. Christopher grew his wings 
and flew to Heaven two months after he was born. Sarah 's daughter, Kalianna, was born 
park, followed by a ceremony to honor Cherubs in Heaven, ending with the joy of being together, refreshments and kids playing in the park.

A virtual parade of Cherubs has been set up on Facebook, Twitter, Google+, and Pinterest so people can show their support by uploading photos and videos whether they are participating in any of the day's events around the world or not.

If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhsupport.org.

Big Day on April 19th

April 19th is going to be a big day for CHERUBS around the world.  But for Illinois (Wisconsin, Indiana, and Michigan) members there are a number of ways to participate in the day's Awareness events.  Of all the events taking place on April 19th to raise awareness for the CHERUBS Day of CDH Awareness around the world, Illinois has two events of its own (with a 3rd nearby).  This doesn't count the Virtual Parade of CHERUBS that all CHERUBS members can participate in regardless of whether or not they can attend an actual parade.

The Chicago Parade of CHERUBS will be taking place at Children's Memorial Hospital in the Lincoln Park area of Chicago.  We are expecting around 70 people to come out for our balloon launch and walk around the hospital area to raise awareness of CDH.  There is still time to register for this event.

The Peoria Parade of CHERUBS will be taking place at the Glen Oak Shelter at Glen Oak Park in Peoria.  This event will take place on April 22nd and is shaping up to be a huge event for CDH awareness as well.  There is still time to register for the Peoria event as well.

Finally for those of you near the Missouri/Illinois border, there is the St. Louis Parade of CHERUBS.  This event will take place on 4/19 at SSM Cardinal Glennon Children's Medical Center in St. Louis.  This is going to be another huge parade for CDH Awareness.  You can still register at http://stlouis2012paradeofcherubs.eventbrite.com/.

How are you raising awareness of CDH on April 19th??

CDH Awareness - Chicago Parade of Cherubs on April 19, 2012

CDH Awareness - Chicago Parade of Cherubs Thursday, April 19, 2012 from 11:00 AM to 2:00 PM (CT) Chicago, IL

Register For The Parade at http://chicago2012paradeofcherubs.eventbrite.com/

Facebook Event Page - http://www.facebook.com/events/402344086447657/

Event Schedule:

• 11:00 a.m. – Arrive at Oz Park (Northeast end off of Lincoln Ave) – 601 W Webster Ave, Chicago, IL 60614
• 11:15 a.m. – Moment of silence to remember those CHERUBS lost
• 11:20 a.m. – Balloon launch
• 11:30 a.m. – Wrap up pictures and begin march/parade (1.2 miles)
• 12:15 p.m. – Finish march back at Oz Park
• 12:30 p.m. – Walk to Buffalo Wild Wings (about ½ mile from park) for Lunch (http://www.buffalowildwings.com/) –
• 2464 N. Lincoln Ave., Chicago
• 2:00 p.m. – Good-byes

 April 19th Parade of Cherubs

International Congenital Diaphragmatic Hernia Awareness Daily Celebration

Join us as we march to raise Congenital Diaphragmatic Hernia Awareness as well as support the CDH Research Bill. Everyone is welcome to participate.

Contact Person - Neil Rubenstein at illinois@cherubs-cdh.org

Facebook Event Page (more up to date details) - https://www.facebook.com/events/402344086447657/

When - Thursday, April 19, 2012.

Where - Oz Park (Northeast end off of Lincoln Ave) – 601 W Webster Ave, Chicago, IL 60614

What - we will march to raise awareness Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness.

Who Can Participate - anyone who wants to raise CDH Awareness.  Please register with us to participate! 

What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon.  All children are encouraged to wear wings.  Wings stand out better on bright colored clothes.  Wear comfortable walking shoes! 

What Not to Wear - Anything trademarked or copywritten materials or phrases.  No turquoise please. 

Wings - you can borrow wings on April 19th if you make prior arrangements above or purchase your own wings at http://www.savethecherubs.org.  Wings are also available at many party supply stores.

Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness in our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!

Learn more about CDH and CHERUBS at www.cdhsupport.org.

CDH Kids Song

I'm a real live cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
He put it all back and here's where he fixed me!

Congential Diaphragmatic Hernia Research Bill

In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.

Sponsor - Sen. Jefferson Sessions

CDH affects 1600 babies in the United States every year, with a 50% mortality rate.  It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth.   The cause of Congenital Diaphragmatic Hernia is not known.   There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida.   More research funds are desperately needed and we are appealing to the United States government to help these babies.

1. Look Up Your Congressmen To find his / her mailing address
2. Download Letter to Send To Your Senator / Congressman
3. Include The CDH Research Bill and a photo of  your cherub
4. Sign the CDH Research Bill petition and ask others to sign as well!

Welcome

Welcome to the blog for Illinois members of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

http://www.cdhsupport.org