Friday, February 27, 2015

Saint Louis Science Center's James S. McDonnell Planetarium Lights Up for CDH Action Day!

Photo courtesy of slsc.org
Saint Louis Science Center's James S. McDonnell Planetarium lights up blue, pink and yellow on April 19th in support of Congenital Diaphragmatic Action Day!

The Saint Louis Science Center's James S. McDonnell Planetarium is one of the nation's leading space education facilities. The James S. McDonnell Planetarium stands as an enduring symbol of St. Louis’ aviation and aerospace history and is one of the city’s most recognized landmarks.  Recently preparations have been underway to relight the Planetarium with a new state-of-the-art, energy-efficent LED color wash system that is capable of producing up to 16 million colors. 

Visit slsc.org for more information and plan your visit. 

Special thanks to The Saint Louis Science Center's James S. McDonnell Planetarium and CHERUBS Missouri State Representative Laura Henderson for raising Congenital Diaphragmatic Hernia Awareness! 


New Mexico Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!



This proclamation was requested on behalf of the Campbell family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Thursday, February 26, 2015

The Leonard P. Zakim Bunker Hill Memorial Bridge Raises Congenital Diaphragmatic Hernia Awareness!

The Leonard P. Zakim Bunker Hill Memorial Bridge in Boston, Massachusetts will be raising Congenital Diaphragmatic Hernia Awareness on April 19th, 2015 by lighting up blue, pink and yellow.

Photo courtesy of Scott Glovsky


Special thanks to our Awareness Committee and everyone at the MassDOT for taking action against Congenital Diaphragmatic Hernia!

Want to see your local buildings and landmarks lit up blue, pink and yellow on April 19th? Send them a request! Contact our awareness committee at awareness@cherubs-cdh.org with any questions.

Monday, February 23, 2015

Fargo, North Dakota Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Stolz family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Friday, February 20, 2015

McKinney, Texas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested in honor of Aven McLeod!

 Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Thursday, February 19, 2015

Missouri Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Henderson family!

 Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Tuesday, February 17, 2015

Nebraska Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Price family!

 Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Friday, February 13, 2015

Terminal Tower Raises Congenital Diaphragmatic Hernia Awareness!

The Terminal Tower in Cleveland, Ohio will be raising Congenital Diaphragmatic Hernia Awareness once again on April 19th, 2015 by lighting up blue, pink and yellow.

Special thanks to the McMarlin Family and everyone at the Terminal Tower for taking action against Congenital Diaphragmatic Hernia!

Want to see your local buildings and landmarks lit up blue, pink and yellow on April 19th? Send them a request! Contact our awareness committee at awareness@cherubs-cdh.org with any questions and approvals.

Tuesday, February 10, 2015

Oklahoma Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!



This proclamation was requested on behalf of the Hurley & Lewallen families!

 Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Saturday, February 7, 2015

Help us Shed Light on Congenital Diaphragmatic Hernia!

Check out some of the places that helped raise Congenital Diaphragmatic Hernia Awareness in 2014 in this video.


Want to see your local buildings and landmarks lit up blue, pink and yellow on April 19th? Send them a request! Contact our awareness committee at awareness@cherubs-cdh.org with any questions.

Thursday, February 5, 2015

Maine Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Dudley family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter. 

Wednesday, February 4, 2015

St. Peters, Missouri Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Henderson family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter.

Tuesday, February 3, 2015

How to help receive Government Funding for CDH Research

Visit Your Member of Congress

Meeting on Capitol Hill

Join us in Washington DC on March 30 - April 1, 2015 to speak directly to Senators and Congressmen about Congenital Diaphragmatic Hernia.

We set up the meetings for you and train you on what to say.  It's very easy and by participating, you get to be a part of history.

Click here to register.

 

A Step by Step Guide to Meeting Locally

Meeting with your legislator in his or her office lets you convey your message about Congenital Diaphragmatic Hernia face to face. Follow these steps to schedule an appointment and make the most of your meeting.

Step 1: Schedule an Appointment

Tips to schedule an appointment:
  • Call well in advance
  • Be prepared to be flexible
  • Be patient but persistent
  • Follow up
  • Say thank you
  • Plan to call the Member of Congress’ office well in advance of when you intend to meet with him/her.
Find your member of Congress. After you’ve looked up your member, click on their name to go to their website. Scroll to the bottom of their homepage and find the phone number for the office where you’d like to have your meeting.

Call your Member of Congress' office and ask to speak with the scheduler. To increase your chances of getting a meeting with your representative, try one of these lines:

“I’m a constituent, and I would really like to meet with the representative/senator to discuss how Congenital Diaphragmatic Hernia has affected my life. Is there a date that he/she is available for this meeting?”

“I would really like to meet with the representative/senator while he/she is back from Washington to talk about Congenital Diaphragmatic Hernia. What date would work best for his/her schedule when he/she is back home?”

Follow up! Clarify the best way for the office to contact you about your meeting request. Call the office again to check the status of your meeting request. Keep contacting the office once a week until you are offered a firm meeting time.

Some offices may require that you put your request in writing in order to schedule a meeting. Use this sample meeting request letter if you are asked to provide a written request.

Step 2: Contact Us

Tell us when you schedule your meeting!

We’ll provide you with all the tools, training, and resources you’ll need to make your meeting a success.

Click here to email the CHERUBS Awareness Committee.

Step 3: Print Your Materials

Click here to find and print all of the handouts you’ll need for your meeting.

Step 4: Attend the Meeting 

When you meet with your Member of Congress, your job is simple — to inspire. Tell your Congenital Diaphragmatic Hernia story — and remember, you’re the expert. Here are some tips to help you make the most of your meeting:

What to Share: 
How to Say It:
  • Be prepared — plan what you want to say
  • Keep it brief
  • Show up early and prepare to be flexible
  • Dress professionally
  • Leave handouts
Better to Leave Out:
  • Acronyms (like “CDH”, instead use “Congenital Diaphragmatic Hernia”)
  • A mention of who you voted for

And don’t forget to let us know how it went!

Click here to email the CHERUBS Awareness Committee.

Step 5: Send a Thank You Letter

If your Member of Congress has taken the time to support Congenital Diaphragmatic Hernia, by meeting with you or sponsoring legislation which is VERY important, it is vital to say thank you.

Here’s a sample thank you letter.

North Carolina Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!




This proclamation was requested on behalf of the Williamson and Moody families!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter.

Sunday, February 1, 2015

Nevada Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Gibson and Houle families!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter.