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 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.

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!