CDH International

As of 2017, CHERUBS is now CDH International, a global initiative to stop Congenital Diaphragmatic Hernia.

Join us at:

Web Site - http://www.cdhi.org
Facebook - http://www.facebook.com/cdhintl
Instagram - http://www.instagram.com/cdhintl
YouTube - http://www.youtube.com/cdhintl
Twitter - http://www.twitter.com/cdhintl

Join the CDH Action Day Thunderclap!

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.

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.

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: 

• Your name and that you are working with CHERUBS- The Association of Congenital Diaphragmatic Hernia Research Awareness and Support
• Your connection to Congenital Diaphragmatic Hernia
• The challenges of the birth defect, with the focus on solutions
• Where you are from and that you are a constituent

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.

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

This proclamation was requested on behalf of the family of Jayden Gilbert!

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.



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



This proclamation was requested on behalf of the Cummings 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.

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

This proclamation was requested on behalf of the Lambert 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.

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

This proclamation was requested on behalf of the Schuller 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.

How are you taking ACTION against CDH on April 19th?

Here are some event ideas for Congenital Diaphragmatic Hernia Action Day...

• Car Wash
• Carnival
• Change for Cherubs
• CDH HOPE Totebag Baby Shower
• Dress Down Day
• Horseback Riding Trail
• Adopt a Hospital Program
• Bake Sale
• Silent Auction
• Ebay Auction
• Raffle
• Candy Sale
• Awareness Bracelet Sale
• Yard Sale/Rummage Sale
• Online Fundraiser
• CDH Walk
• CDH Run/Marathon
• CDH Golf Tournament
• Baseball Tournament
• Bowl-a-Thon
• CDH Blood Drive
• Balloon Release
• Penny Drive

If you have any questions or are interested in holding a fundraiser, please contact our fundraising committee at fundraising@cherubs-cdh.org.

90 Days until Congenital Diaphragmatic Hernia Action Day!

How are you going to take action against CDH?

April 19th is Congenital Diaphragmatic Hernia Action Day! Congenital Diaphragmatic Hernia Awareness is key factor in helping with more funding for research.

Here are just some ways you can help raise CDH Awareness:

• Write your governor and mayor to proclaim April 19th Congenital Diaphragmatic Hernia Action Day. Click here for a sample letter. 
• Wear CDH awareness apparel and merchandise. Click here to shop now. 
• Hold an event. Click here for more details. 
• Participate in the "Save The Cherubs Campaign". 
• Join us on Capitol Hill on March 30rd-April 1st. Click here for more details. 
• Request buildings, bridges, and landmarks to light it up blue, pink, and yellow on April 19th.
• Donate a tweet a day at www.justcoz.org/cherubs. 
• Share posts, graphics, and updates from our social media pages. 
• Contact the media! Go to your local news, radio, paper, etc. and ask them to do a story on CDH.
• Ask local billboard company if they will donate a CDH awareness billboard. Some companies will donate digital billboards when available. 
• Be a guest blogger on our Nicolas Sparks blog. Email your entry to awareness@cherubs-cdh.org. 
• Join our Awareness Committee. The more people we have working together the more we can accomplish. Click here to join!

#GivingTuesday CDH Awareness

Thank you to everyone who supported our charity for #GivingTuesday!  Here are just a few of the photos shared over social media yesterday:

Join Us on the Very First Planned European CDH Conference for Families!

First Ever Annual International European Congenital Diaphragmatic Hernia Conference for Families!

 

Dublin, Ireland

Questions or information?  Contact our UK CHERUBS Representatives Clair Maher, Melanie Parsons and Zoe Burcell at uk@cherubs-cdh.org

CDH FAMILY CONFERENCE

For over 10 years CHERUBS has held CDH Conferences, with our set up as:

Day 1 - Pizza Party/ Dinner

• Family Introductions
• Parade of Cherubs 

Day 2 - Research Day

• Medical Speakers
• Medical Q&A Panel
• Free Genetic Testing
• CDH Lab & Clinic Tours 

Day 3 - Awareness Day

• CDH Research Bill
• April 19th
• Volunteering
• Fundraisers 

Day 4 -  Support Day

• Round Table Discussions
• Kids CDH Song Performance
• Family Conference Conclusion

Posting to give families a bit of history of what our conferences have been like for the last 10 years so you have somewhat of an idea what to expect at not just our conference, but all CDH conferences now (we love teaching others!).   BUT how we set up our Dublin conference will be NEW and not public knowledge until closer to the date.   We like being ORIGINAL and creative and are very excited to work with MANY other charities in ACDHO in the first truly European CDH Conference!  Stay tuned!  :)

 

Hotel Information can be found at http://www.thomaspriorhall.com/hotel

Limited number of Rooms available at a discounted rate of:

• Double Room B&B (2 Adults)  €99 Per Room Per Night
• Triple Room B&B (2 Adults and 1 Child)  €104 Per Room Per Night
• Family Room B&B (2 Adults & 2 Children) €109 Per Room Per Night

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS and participating ACDHO charities to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

• 3 half-days so you have time to see local attractions
• Pizza party and parade of cherubs
• World renown guest speakers
• Great round-table discussions for families of survivors and angels
• Participate in CDH Research
• Meet other CDH families
• Kids are always welcome!
• Special needs families often qualify for grants to attend (check with your social worker)
• Our conference makes a wonderful family vacation

 

CDH Family Conference:

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

* 3 half-days so you have time to see local attractions
* Pizza party and parade of cherubs
* World reknown guest speakers
* Great round-table discussions for families of survivors and angels
* Participate in CDH Research
* Meet other CDH families
* Hotel rooms are always affordable for the area
* Kids are always welcome!
* Special needs families often qualify for grants to attend (check with your social worker)
* Our conference make a wonderful family vacation!!!!

CHERUBS MEDICAL ADVISORY BOARD

• Patricia Donahue, MD – Massachusetts General Hospital
• David Kays, MD – University of Florida at Gainesville
• Henry Rice, MD – Duke University Medical Center
• Edmund Yang, MD – Fetal Treatment Center of St. Louis
• N. Scott Adzick, MD – Children’s Hospital of Philadelphia
• Kevin Lally, MD, MS - University of Texas Medical School at Houston, CDH Study Group

• Wendy Chung, MD - Columbia Presbyterian, DHREAMS

• Doug Miniati, MD - University of California San Francisco
• Jan Deprest, MD, PhD - University Hospital Gasthuisberg, Leuven, Belgium
• Paul Losty, MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) – Liverpool University, UK

• Steadman McPeters, NP - Pediatric Surgery Nurse Practioner, Huntsville

PAST CHERUBS CONFERENCE PRESENTERS

The following have presented at CDH Family Conferences in past years:

• Jay Wilson, MD - Boston Children's Hospital, Harvard University
• Patricia Donahoe, Massachusetts General Hospital
• Michael R. Harrison, MD - University of California at San Francisco Fetal Treatment Center
• David Kays, MD - University of Florida at Gainesville / SHANDS
• Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program
• Marc Arkovitz, MD and Julia Wynn - New York Presbyterian Columbia / DHREAMS
• Bella Belleza-Bascon, RN, MHA - Texas Children's Hospital / Fetal Center, Baylor College of
Medicine
• Kevin Lally, MD - CDH Study Group
• Daryl Scott, MD and David Pearson - Baylor Genetic CDH Study Program
• Dr. Edmund Yang, St. Louis Fetal Care Institute
• Ruben Quintero, MD - Fetal Treatment Program
• Priscilla Chiu, MD - Sick Children's, Toronto, Canada
• Brenda Slavin, RN - Children's National Medical Center, Washington DC

Announcing 2014 International CDH Conference in Washington DC

2014 CHERUBS Annual Congenital Diaphragmatic Hernia Conference

 

Medical Conference - June 24-27, 2014
Family Conference – June 26-29, 2014

Washington DC

 
CDH MEDICAL CONFERENCE
 


This conference includes all medical specialties that work with CDH patients including pediatric surgeons, neonatologists, geneticists, dieticians, pediatricians, pulmonologists and others as well as the patients and families affected by CDH to come together to search for the cause, prevention and best treatments of Congenital Diaphragmatic Hernia.
 
All medical professionals are welcome to attend both the CDH Medical and CDH Family Conferences.   There is a $150 conference fee for medical professionals.

Tuesday, June 24th - Research Presentations*

• Poster Presentations & Display (submissions can be sent to research@cdhsupport.org)
• Vendors

Wednesday, June 25th - Round Tables / Panels

• Evening Pizza Party at Parent Conference
• Parade of Cherubs
• CDH Research on Capitol Hill
• Vendors

Thursday, June 26th - Capitol Hill

• Capitol Hill Visits
• Parade of Cherubs

• Pizza Party

Friday, June 27th - Conclusion

• Medical Panel at Parent Conference

• Medical Conference Conclusion

• Vendors

Medical Professionals only allowed on Tuesday, June 24th

POSTER AND PAPER SUBMISSIONS

Abstracts and posters may be submitted to research@cdhsupport.org by June 15th for consideration.  

They will be reviewed jointly by your conference hosts.

PAST PRESENTERS

The following have presented at CDH Family Conferences in past years:

• Jay Wilson, MD - Boston Children's Hospital, Harvard University
• Patricia Donahoe, Massachusetts General Hospital
• Michael R. Harrison, MD - University of California at San Francisco Fetal Treatment Center
• David Kays, MD - University of Florida at Gainesville / SHANDS
• Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program
• Marc Arkovitz, MD and Julia Wynn - New York Presbyterian Columbia / DHREAMS
• Bella Belleza-Bascon, RN, MHA - Texas Children's Hospital / Fetal Center, Baylor College of
Medicine
• Kevin Lally, MD - CDH Study Group
• Daryl Scott, MD and David Pearson - Baylor Genetic CDH Study Program
• Dr. Edmund Yang, St. Louis Fetal Care Institute
• Ruben Quintero, MD - Fetal Treatment Program
• Priscilla Chiu, MD - Sick Children's, Toronto, Canada
• Brenda Slavin, RN - Children's National Medical Center, Washington DC



CDH FAMILY CONFERENCE

Thursday, June 26th - Capitol Hill

• Capitol Hill Visits
• Parade of Cherubs

• Pizza Party

Friday, June 27th - Research Day

• Medical Speakers
• Medical Q&A Panel
• Free Genetic Testing
• CDH Lab & Clinic Tours 

Saturday, June 28th - Awareness Day

• CDH Research Bill
• April 19th
• Volunteering
• Fundraisers 

Friday, June 29th - Support Day

• Round Table Discussions
• Kids CDH Song Performance
• Family Conference Conclusion

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

• 3 half-days so you have time to see local attractions
• Pizza party and parade of cherubs
• World renown guest speakers
• Great round-table discussions for families of survivors and angels
• Participate in CDH Research
• Meet other CDH families
• Kids are always welcome!
• Special needs families often qualify for grants to attend (check with your social worker)
• Our conference makes a wonderful family vacation


About The CDH Family Conference:

• Expect to learn a lot about Congenital Diaphragmatic Hernia!
• Our guestspeakers are always the best in their fields, bringing us new information every year!
• ALL CDH families are welcome to attend!  This includes families of survivors, grieving families and expectant families.
• Our conferences include family introductions, round-table discussions, research guest lectures, Q&A sessions and much more!
• Each conference runs for 3 half-days; CDH Research Day, CDH Awareness Day and CDH
Support Day.
• CHERUBS conferences are planned to be educational, supportive and affordable!
• Our conference hotels always offer rooms around $100 per night, breakfasts and parking.
• Meet new friends, see old friends and participate in research for various hospitals.
• Our conferences are always half days so that families can enjoy local tourist attractions.
• Children are welcome and babysitting services will be provided during conference hours.
• Our conferences are held near top rated hospitals for safety.
• We take photos, we videotape intros and lectures but we ALWAYS respect member confidentiality and privacy!
• Join in our new Parade of Cherubs at every conference!
• Join in our balloon releases at every conference!
• We have a pizza party on the first night of every conference.
• Kid's get a chance to learn the CDH kids song and perform on the last day of the conference.
• CHERUBS does not charge a conference fee.
• For safety and privacy of our members, you MUST be a member of CHERUBS to attend.  You
may register for free at http://www.cherubs-cdh.org/members
• Many families of survivors are eligible for grants to cover travel expenses to medical
conferences.  Ask your child's social worker for more information.


Registration for CDH families is just $5.00 per person for the entirety of the conference and includes pizza party. 


ACCOMODATIONS

Will be posted soon!


SPONSORSHIP & VENDOR OPPORTUNITIES

Breakfast Sponsorship on Tuesday, Wednesday, Friday, or Saturday: $1500 + Cost of
Food after May 30, $1200 + Cost of Food if contract is signed and paid prior to May 30.
Sponsorship includes Logo displayed on Screen prior to and post talks, product distribution on
tables, acknowledgement in program and on conference website.

Breakfast Sponsorship Thursday- A special opportunity to reach medical professionals,
researchers, and parent participants during the only joint session of the conference!  $2000 +
Cost of Food after May 30, $1500 + Cost of food if contract is signed and paid prior to May 30.
Sponsorship includes Logo displayed on Screen prior to and post talks, product distribution on
tables, acknowledgement in program and on conference website. 

Pizza Party-  During this session the medical professionals, researchers, and families will come together for food and fellowship. This is the night prior to the beginning of the Family Conference, and families introduce themselves and share their CDH stories. 

    3 $1000 sponsorships are available.

    1 $2500 sponsorship non-competing sponsorship available (No competing companies will be allowed to sponsor) 

Kids Entertainment room: Entertainment room with babysitters during parent conference only (Thursday-Saturday 8am-12pm).  $2000.

Other Sponsorship Opportunities:

Conference Bags- $2000  Includes sponsor’s logo on one side of bag and CHERUBS logo on
other side of bag. CHERUBS to manage ordering and production of bag, at no additional cost to
sponsor.

Lanyard/ Badge Holder- $1500  Includes sponsor's logo and the CDH awareness
ribbon.  CHERUBS to manage ordering and production of lanyard at no additional cost to
sponsor.

Information/Advertisements in bags- $250

Contact Ashley Barry at abarry@cherubs-cdh.org or 919-624-2883 for more information or
purchase sponsorship on-line at 

http://www.cdhconference.org 


CHERUBS MEDICAL ADVISORY BOARD

• Patricia Donahue, MD – Massachusetts General Hospital
• David Kays, MD – University of Florida at Gainesville
• Henry Rice, MD – Duke University Medical Center
• Edmund Yang, MD – Fetal Treatment Center of St. Louis
• N. Scott Adzick, MD – Children’s Hospital of Philadelphia
• Kevin Lally, MD, MS - University of Texas Medical School at Houston, CDH Study Group

• Wendy Chung, MD - Columbia Presbyterian, DHREAMS

• Doug Miniati, MD - University of California San Francisco
• Jan Deprest, MD, PhD - University Hospital Gasthuisberg, Leuven, Belgium
• Paul Losty, MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) – Liverpool University, UK

• Steadman McPeters, NP - Pediatric Surgery Nurse Practioner, Huntsville

CDH Family Conference:

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

  * 3 half-days so you have time to see local attractions
* Pizza party and parade of cherubs
* World reknown guest speakers
* Great round-table discussions for families of survivors and angels
* Participate in CDH Research
* Meet other CDH families
* Hotel rooms are always affordable for the area
* Kids are always welcome!
* Special needs families often qualify for grants to attend (check with your social worker)
* Our conference make a wonderful family vacation!!!!

2011 Conference

Our 2011 Conference in Orlando, FL Location:   Orlando, FL Guest Speakers:  The Center for Fetal Diagnosis and Treatment at CHOP Dr. Edmund Yang, St. Louis Fetal Care Institute Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program Julia Wynn - New York Presbyterian Columbia / DHREAMS Special Events: 2nd Annual CDH Balloon Release 2nd Annual March of the Cherubs CDH Research Day, CDH Awareness Day and CDH Support Day Introduced at the APSNA Conference

2010 Conference

Our 2010 Conference in Orlando, FL Location:   Orlando, FL Guest Speakers:  Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program Marc Arkovitz, MD and Julia Wynn - New York Presbyterian Columbia / DHREAMS Bella Belleza-Bascon, RN, MHA - Texas Children's Hospital / Fetal Center, Baylor College of Medicine Special Events: 1st Annual CDH Balloon Release 1st Annual March of the Cherubs CDH Research Day, CDH Awareness Day and CDH Support Day Introduced at the APSNA Conference Click here to download brochure. Click here to view lecture videos.

2009 Conference

Our 2009 Conference in San Antonio, TX

Location:   San Antonio, TX Guest Speakers:  Kevin Lally, MD - CDH Study Group Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program Daryl Scott, MD and David Pearson - Baylor Genetic CDH Study Program Special Guests:   Kevin and Brenda Lane - CHERUBS UK Julian and Danielle Kessner - CHERUBS Australia Kimberly Richards - The Olivia Raine Foundation Tim and Michelle Brown - Little Lambs Special Events:   Unveiling of the CDH Song, "I'll Never Let You Go" by The Jammies 1st Performance of the Kid's CDH Song Click here to download brochure. Click here to view lecture videos.

2008 Conference

Our 2008 Conference in Durham, NC

Location:   Durham, NC Guest Speakers:  Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program Priscilla Chiu, MD - Sick Children's, Toronto, Canada Brenda Slavin, RN - Children's National Medical Center, Washington DC Special Events:   Inaugural Angel Ball 2008 CDH Golf Tournament Click here to download brochure. Click here to view lecture videos.

More Past Event Speakers

Jay M. Wilson, MD - Harvard University / Boston Children’s Hospital Michael R. Harrison, MD - University of California at San Francisco Fetal Treatment Center David Kays, MD - University of Florida at Gainesville / SHANDS Ruben Quintero, MD - Fetal Treatment Program