#GivingTuesday is December 3: How are you planning to give back??

Just in case you haven't heard all the fuss over the last few weeks, #GivingTuesday is this Tuesday, December 3.  What is #GivingTuesday?

It is a day created to GIVE BACK.  It's that simple.  We just spent a long weekend focusing on how thankful we are for what we have followed by a couple intense days of shopping.  'Tis the season for giving. So why not give to a charity that has touched us all so deeply.  If you give in any way on December 3, then you have participated in #GivingTuesday.

However, for me, CHERUBS is at the top of the list of charities to consider this 2nd annual #GivingTuesday. 

So how can you give to CHERUBS??  Here's a quick list of ways you can donate:

1. Give directly to CHERUBS via the webpage.
2. Donate via the CHERUBS #GivingTuesday FirstGiving page
3. Support National Children's Memorial Day and light a virtual candle for CDH babies gone too soon for only $5 per candle.
4. Purchase the 1st ever CHERUBS lullaby for only $1.89 (or more).  
5. Shop on Amazon, Ebay, or Goodsearch.
6. Participate in the CDH Jewelry fundraiser on Etsy from our Oregon State Rep.
7. Shop the CHERUBS CDH Awareness Shop
8. Purchase a CDH Awareness 2014 calendar.
9. Play the Give a Heart game on your computer or mobile device and donate your hearts to CHERUBS.
10. Sign up to donate a tweet via JustCoz to CHERUBS.

and one more bonus way to donate:

  11.  Check out Kylee's 13th Birthday fundraiser for CDH Research

This is definitely not an exhaustive list, but it's a good start.

Happy Donating!

A Fighter's Lullaby - The words you have been waiting for

Some of you have asked about the words to this amazing lullaby after listening to it a couple times.  First of all, thank you for your support in this CDH Research fundraiser. 



Here are the words to this beautiful song written by Ross Crean with those affected by CDH in mind:

"A Fighter's Lullaby"

It's all clear now, little one,
Sleep away.
No more fears and disturbia
Will be here to stay.

Let the sky full of stars
Blanket the darkness that gets in your way.
Just hold on to the promises
That tell you to there's soon to be
Much brighter days.

Don't carry your shield and sword
Through those reveries.
Get on the boat, leave them on the shore
While you sail to dream.

Let the sky full of stars
Blanket the darkness that gets in your way.
Just hold on to the promises
That tell you to there's soon to be
Much brighter days.

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
Shopping Cart by E-junkie

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.


Shopping Cart by E-junkie

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

We're in the home stretch of the Groupon Grassroots Totebag Fundraiser

Just in case you haven't heard, CHERUBS has partnered with Groupon Grassroots to launch a fundraiser to help support the HOPE Totebag program.  These totebags are sent to CHERUBS members who are expecting a child with CDH or with one currently in the NICU.  It includes lots of items and information to help with an extended hospital stay (which unfortunately is very common among children who have CDH).

This fundraiser launched last Thursday (5/30) and runs until Sunday, June 9.  The awesome thing about this fundraiser is that Groupon actually absorbs all fees and transactions costs, so 100% of the money raised goes directly to CHERUBS.   100%!!

Donations can be made in increments of $10 with every 5 donations covering the cost of one bag.  There aren't many easier ways to donate to such a worthwhile cause where 100% of the money raised goes to the chosen charity.

Why am I so passionate about this fundraiser?  Here's a blog post I wrote for my friends at RockScar Love called "Death, you messed with the wrong dad AGAIN"

Please consider making a donation.  Thank you very much.

Here is the link to donate:  http://www.groupon.com/deals/cherubs

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 2013 CDH Scholarships

Two $1000 scholarships will be awarded this year in memory of cherub Oz Kidd-Ward.

Download the application at http://www.cherubs-cdh.org/CHERUBS2013ScholarshipApplication.pdf

Applications are accepted each year between March 1 and June 24th and must be accompanied by the following applicable items:

·      High school transcript(s) or Recent Report Card with GPA

·      College Acceptance Letter(s)

·      Two letters of recommendation.  Letters must be dated within the last three months.

Rewards are granted on merit without regard to race, religion, creed, sex, national origin or disability status.  All applicants must be a current member of CHERUBS or have a parent that is a registered member of CHERUBS.  The CHERUBS CDH Scholarship is not available to children of members on the CHERUBS Executive Board or the CHERUBS Parent Advisory Board (CPAB).  Winner(s) will be announced at the International Congenital Diaphragmatic Hernia Conference on Wednesday, July 10, 2013, in Boston, MA

For more information:
CHERUBS - Congenital Diaphragmatic Hernia (CDH): CHERUBS 2013 CDH Scholarships

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/

S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

On March 20, 2013 Senator Jeff Sessions (R-AL), along with Co-Sponsor Senator Ben Cardin (D-MD) introduced  S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

On March 20, 2013 it was passed.

The United States Senate has officially designated April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

http://www.govtrack.us/congress/bills/113/sres85

This is an incredible victory for our cause in the battle against CDH and today, we celebrate!  

This resolution not only asks for awareness for an entire month but for research as well.   A press release and full text will be posted soon.

Even as we celebrate, the war is not yet over.  We are now rallying the troops to introduce and pass a resolution in the United States House of Representatives as well for CDH Awareness and also for Research.  

We also continue to gather proclamations from cities and states for more local awareness. 

The Parades of Cherubs across the country will now turn into celebrations also.

The Washington DC Parade of Cherubs has now changed focus from the Senate to the House as we march on Capitol Hill.

We ask our members and supporters to continue to push to raise more CDH Awareness, to join in and celebrate with us on April 19th by marching in a Parade of Cherubs, joining an event or participating in the Virtual Parade of Cherubs on-line.  

http://www.cdhawarenessday.org

This achievement has been many, many years in the making but it could not have been done without the support of our members, other CDH charities, all those who signed the petitions and all those who never gave up.   Our deepest, sincerest gratitude goes out Senator Sessions and his family for without their cherub, Jim Beau, and their amazing support none of this would be possible.

CHERUBS - Congenital Diaphragmatic Hernia (CDH): S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

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

  

CHERUBS 2012 Milestones and Accomplishments for Congenital Diaphragmatic Hernia

As we wrap up 2012 and welcome 2013, our charity would like to thank all of the members, donors and friends who make it possible for us to help families affected by Congenital Diaphragmatic Hernia.

We are very proud of our accomplishments this year and look forward to many more in the upcoming year!

CHERUBS 2012 Milestones and Accomplishments (so far):

  * New Executive Board of Directors
  * New Parent Advisory Board
  * New Medical Advisory Board
  * New Vice-President, Ashley Barry
  * New Secretary, Lauren Campbell
  * New Treasurer, Kelly Green-Krist
  * Senate Bill S.3396 Introduced
  * Parade of Cherubs on April 19th in Washington DC to Capitol Hill
  * Members met with the offices of over 25 Senators
  * April 19th CDH
  * Parades of Cherubs on April 19th in Chicago, Seattle, Portland, Denver, St. Louis, Peoria
  * UK Light up The Night on April 19th
  * First ever Virtual CDH Awareness Parade on April 19th  * 2012 CDH Conference in San Francisco
  * New CHERUBS Web Site
  * New Logo
  * New Facebook Forums Application created
  * $10,000 CDH Research Grant contest started (ends December 30th)
  * $10,000 CDH Research Grant awarded to ______________ on December 30th (by votes)
  * Another $10,000 CDH Research Grant awarded to ______________ on December 30th (already chosen)
  * First ever Facebook Grant Contest held by a CDH charity
  * Over 300 care packages sent to families through our CDH HOPE Totebag project
  * CDH families represented at the American Pediatric Surgical Association conference
  * Our 2012 National Children's Memorial Day tribute honored the memories over 1000 cherubs
  * Texas Get-Together
  * Ohio Picnic
  * UK Get-Together in Scotland
  * Chicago CDH Carnival  * Pennsylvania / NJ / Delaware Picnic
  * Denver Picnic
  * Indiana Get-Together
  * Washington Zoo Trip
  * Oregon members met with Senators
  * Oregon members represent CDH families at the opening of Randall Children's Hospital
  * Over 900 raffle tickets sold for the 50/50 CDH Research Raffle raising $9000 for Research
  * Over 10,000 Facebook Fans reached
  * Over 10,000 signatures reached on CDH Research Bill petition
  * Over 18,000 people reached in one post on Facebook
  * 2012 Silver Lining Newsletter Published
  * 2012 CDH Awareness Video
  * Day of 2012 CDH Awareness Video
  * Participated in televised Raleigh Christmas Parade
  * CHERUBS members in Claremont, NC Christmas Parade
  * CHERUBS members in Snoqualmie Days Parade
  * It's a Knock-Out UK Fundraiser
  * Masquerading Angels Ball
  * UK Formal Ball
  * CDH Awareness Calendar featuring over 1300 CDH patients
  * Save the Cherubs CDH Awareness Calendar
  * First CDH Awareness Calendar in the United Kingdom
  * Won Shane Co. charity contest
  * Won the JuJuBelle Facebook contest
  * Our CDH Awareness Ribbon included in St. Louis Cardinals Game to raise money for St. Louis hospital
  * Washington Mud Run Fundraiser
  * Enter Stage Left Fundraiser  * UK Fishing Competition Fundraiser
  * Rockin' for Aidan Fundraiser
  * CHERUBS joins Google+
  * CHERUBS joins Chirpify
  * CHERUBS joins Pinterest
  * CHERUBS joins Instagram  * CDH Fundraising Kits created
  * Cooking With Cherubs cookbook project begun
  * Participated in the San Francisco Marathon
  * Participated in the Boston Marathon
  * Participated in the Baltimore Marathon
  * Participated in the Great Human Race in Durham, NC
  * Participated in the Iron Girl all women's half Marathon in the Mid-Atlantic
  * Participated in the Baltimore, MD Metric Marathon
  * Participated in the High Cloud Snapple Half Marathon in Washington, DC
  * Save The Cherubs in the Silicon Valley
  * New Holiday Facebook Covers project started
  * Dozens of free CDH Awareness graphics made
  * New yellow CDH Awareness Bracelets created
  * 47 members of the Angel Club
  * Over 100 new Save the Cherubs posters created
  * Membership reaches over 4200 families in 54 states
  * CHERUBS moves to new office
  * 5 television interviews
  * Over 2 dozen newspaper articles
  * 1 magazine article
  * Moved to new office

Be sure to check out the main CHERUBS blog for more great pictures of our 2012 accomplishments.

There's still time to vote: CHERUBS sponsors $10,000 Facebook Contest to Benefit CDH Research

Something very exciting is going on at +CHERUBS and we want YOU to be a part of it! Thanks to all of you wonderful members and fans for buying and selling raffle tickets we are ready to award a $10,000 CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH GRANT!!!! We could choose a hospital ourselves but we thought it would be more fun, and raise more awareness, to get your help! So the hospital with the most votes by December 30th will win $10,000 for CDH Research!!!!!!!!!!!!

Vote at https://www.facebook.com/questions/10151158907097006 

In the running are the following CDH labs and clinics: 

• Congenital Diaphragmatic Hernia (CDH) Genetic Research Study
• DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab 
• St. Louis Fetal Care Institute 
• Baylor College of Medicine CDH Genetic Lab 
• The Center for Fetal Diagnosis and Treatment at CHOP 
• UCSF Fetal Treatment Center 
• Shands at the University of Florida CDH Clinic 
• Boston Children's Hospital CDH Clinic 

For more information:

CHERUBS - Congenital Diaphragmatic Hernia (CDH): CHERUBS sponsors $10,000 Facebook Contest to Benefit CDH Research

Thank you, Thank you, Thank you!!

Well we did it!  What?  We got 10,000 signatures/supporters (our goal) on the CDH Research Bill petition. Now what?  The petition is still open, so if you have not signed it yet---please do so.  More is always better.  We need to convince the Review Committee that Bill S.3396 is worth passing on to the entire Senate for a vote.  All 10,100 (as of this post) will be printed out and hand delivered to the the Senators on the Committee in Washington D.C.  

If you have not done so, please write your Senators telling them how important this Bill is to you.  You can find letter templates and additional information at www.cdhbills.org.  We are on our way and 10,000 supporters is amazing, but we still have more work to do.  

In other news, the 1st ever Chicago Kids Carnival was a huge success.  We had at least 150 guests brave the torrential rain and tornadoes to help raise money for CHERUBS.  I am already looking forward to next year.  If you have not seen the pictures already...they can be found on the CHERUBS Facebook page.

So what's next?  There are so many events and fundraisers going on, it's hard to keep track....but here goes:

Petitions:

1.  You can still sign the CDH Research Bill - the more signatures the better
2.  You can sign the Light the White House up with Clouds on April 19 petition

Fundraisers/Events:

1. Toy Drive to benefit Hope Children's Hospital.  I am happy to bring donations down to the drop-off spot as long as I have the toys by 12/10.  
2. Enter Stage Left CHERUBS Fundraiser in Woodstock, IL
3. CDH Ornament sale - 25% of every sale goes to CHERUBS
4. Buy a CHERUBS charm on eBay - 100% of the purchase price is being donated to CHERUBS and get FREE shipping
5. Participate in the Give a $1 CHERUBS Fundraiser
6. Be on the lookout for more information about the 2nd Annual April 19th Chicago Parade of CHERUBS!

Other ways to participate:

1. Submit you story to be included in the "Stories of CHERUBS" book to be published in February 2012
2. Submit your favorite recipes to be included in the CHERUBS Cookbook.  Just send your recipe to cherubscookbook@yahoo.com.  Be sure to include you name and the name of the cherub you are honoring/supporting.

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).  

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.