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.

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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!

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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.

 

News from CHERUBS

Featured Cherub: Sofia Marie Carman

Featured Cherub of the Week is Sofia Marie Carman, she is the daughter of Steve and Katie Carman. 

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CHERUBS Annual Blue Jays Get Together, April 27, 2019

Save the date!  The annual Blue Jays Get Together is scheduled for April 27, 2019. Canada International Representative, Amanda Plakholm, is in the process of organizing a CHERUBS Get Together for families at the Toronto Blue Jays game on Saturday, April 27, 2019. The game is at 3:07pm against the Oakland A's. This is the 5th annual Cherubs Blue Jays Game gathering, where CDH families and friends can come together to raise CDH Awareness. To reach Amanda please email This email address is being protected from spambots. You need JavaScript enabled to view it. .

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Featured Cherub: Steven Hilario Lagunas

Featured cherub of the week is Steven Hilario Lagunas. He is the son of Berenice and Steven Lagunas. He fought so hard for 6 months, a warrior in every sense of the word.  From Steven's GoFundMe page, "Steven was a beautiful boy with a personality that shines brighter than the sun. His smile and his long eyelashes stole everyone’s heart. He smiled regardless of what he was going through. He truly is the strongest little boy we knew. Although our time with him was cut short he will be incredibly missed and loved forever. The time spent with him will forever be cherished."

The following is shared by cherub Steven's mom:

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2017 - News from CHERUBS

Featured Cherub: Sofia Marie Carman

Featured Cherub of the Week is Sofia Marie Carman, she is the daughter of Steve and Katie Carman. 

Read more...

CHERUBS Annual Blue Jays Get Together, April 27, 2019

Save the date!  The annual Blue Jays Get Together is scheduled for April 27, 2019. Canada International Representative, Amanda Plakholm, is in the process of organizing a CHERUBS Get Together for families at the Toronto Blue Jays game on Saturday, April 27, 2019. The game is at 3:07pm against the Oakland A's. This is the 5th annual Cherubs Blue Jays Game gathering, where CDH families and friends can come together to raise CDH Awareness. To reach Amanda please email This email address is being protected from spambots. You need JavaScript enabled to view it. .

Read more...

Featured Cherub: Steven Hilario Lagunas

Featured cherub of the week is Steven Hilario Lagunas. He is the son of Berenice and Steven Lagunas. He fought so hard for 6 months, a warrior in every sense of the word.  From Steven's GoFundMe page, "Steven was a beautiful boy with a personality that shines brighter than the sun. His smile and his long eyelashes stole everyone’s heart. He smiled regardless of what he was going through. He truly is the strongest little boy we knew. Although our time with him was cut short he will be incredibly missed and loved forever. The time spent with him will forever be cherished."

The following is shared by cherub Steven's mom:

Read more...