U.S. House of Representatives Introduces Resolution for CDH Awareness Month

H. Res 144 that was introduced this week in the United States House of Representatives to make April, 2013 "National Congenital Diaphragmatic Hernia Awareness Month" by Rep. Martha Roby (R-AL) and co-sponsored by Rep. George Holding (R-NC). 

A companion bill was passed unanimously in the Senate on March 20, 2013 - S. Res. 85 which was sponsored by Senator Jeff Sessions (R-AL) and co-sponsored by Senator Ben Cardin (D-MD).

Congenital Diaphragmatic Hernia (CDH) affects 1600 babies a year in the United States, taking the lives of 800 children.  CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. The cause is unknown.  There is no awareness and very little research funding.  

CHERUBS - Congenital Diaphragmatic Hernia (CDH): U.S. House of Representatives Introduces Resolution for CDH Awareness Month

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

  

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.

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

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!

CHERUBS - “Surviving C47” by Lindsay Hales. A CDH Journey. All proceeds for April donated to CHERUBS!

CHERUBS - Congenital Diaphragmatic Hernia (CDH): “Surviving C47” by Lindsay Hales. A CDH Journey. All proceeds for April donated to CHERUBS!

Great way to support CDH Awareness!

Did you know....

Did you know that CHERUBS has received Proclamations from the states of Illinois and Wisconsin as well as the city of Chicago supporting CDH Awareness on April 19th and the Chicago Parade of Cherubs:

What are you doing on April 19th?

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!