25 Years of CDH International

2017 was the end of the “mom and pop” little support charity with our rebirth into “CDH International”.

After waiting over 20 years to know the cause and how to prevent and best treat Congenital Diaphragmatic Hernia, we were frustrated. We still didn’t have a Standard of Care or even standard measurements of mortality or morbidity for CDH. We had no idea the real survival rate because every hospital was measuring by their own measuring sticks… some didn’t include babies who died in transport or after discharge. Even more didn’t include babies who died before repair. It was more marketing than accurate data and parents had no idea where to go for treatment. The doctors wouldn’t work together on this. Some of the charities wouldn’t work together. And every year, more of our children were dying. After 20 years, our patience was waning for the medical world to get their act together to really get on one page and help our children. And not just our children in the US or Europe… but those children in lower and middle income countries that didn’t even have pediatric OR’s. They were being completely written off as “lost causes” and that was not acceptable.

Then one day during lunch at a medical conference, one of the surgeons nonchalantly said “there’s no accreditation for CDH hospitals and too many egos”… and with that one sentence a seed was planted and CDH International was born.

We completely revamped, rebranded and renamed the charity within 3 months. If we wanted our children to stop dying then we had to step up and start demanding collaboration and better care and real survival rates. As the world’s largest and oldest Congenital Diaphragmatic Hernia charity, it was on us to make this happen by starting the process to accredit hospitals and work on a Standard of Care and Standard Measurements of Mortality and Morbidity for all CDH patients.

We divided the charity into 3 Departments; Research, Awareness and Support. Dawn Ireland stepped into the research role, with Josh Hensley and Onno Zwart… the man who started the very first CDH charity in the Netherlands in 1994. Tracy Meats took over Support. Awareness has had several leaders in our first 3 years.

By challenging the system and putting the babies before egos and profit, we ruffled a few feathers but most of the CDH community rallied behind us. We were doing the right thing for all the children and we have not wavered.

CDH Medical World News for 2017

CDH Study Group meets in Liverpool, England.

CDH International News for 2017

CHERUBS was restructured into CDH International
CDH Research Database unveiled.
CDHi speaks at the CDH Study Group Conference in Liverpool, in attendance with leaders of 3 other CDH charities in ACDHO
Multi-disciplinary committees for CDH Accreditation have begun
CHERUBS was restructured into CDH International
CDH Standard of Medical Care outline created
Multi-disciplinary Medical Advisory Boards for CDHi Created
CDH Institute Accreditation outline created with accreditations starting in 2018
New President of CHERUBS (a division of CDHi), Tracy Meats
New CDH Awareness division created
New web site
New branding, materials, social media, etc
Reached over 6300 families and medical care providers in our membership
Helped families and researchers in 70 countries
Raised over $40,000 in one day during the first annual CDH Telethon
Sent out over 120 CDH HOPE Totebags
2017 CDH Conference in Salt Lake City
Gave a speech at the CDH Study Group Conference in front of the world’s experts on CDH
Referred over 100 patient families to DHREAMS / Mass General / University of Utah for genetic testing
Met with leader of the NICHD at the National Institutes of Health to discuss funding for CDH
Involved in the Friends of NICHD charity alliance to further funding for child diseases and defects
Representing structural birth defects associations in new national health database at NIH
Working with NICHD, CHOP, DHREAMS, Mass General on modeling the new NIH Kid’s First Database after our CDH Research Database
Unanimous passing of resolution proclaiming April, 2017 Congenital Diaphragmatic Hernia Awareness Month in the U.S. Senate
Introduction of resolution proclaiming April, 2017 Congenital Diaphragmatic Hernia Awareness Month into the U.S. House of Representatives
Brought on 2 new members of the Executive Board of Directors
Added 2 new members to the Medical Advisory Board
Lobbied on Capitol Hill for Congenital Diaphragmatic Hernia Awareness
Represented CDH at the 2017 American Academy of Pediatrics Conference
Represented CDH at the 2017 American Pediatric Surgical Association Conference
Represented CDH at the 2017 American Pediatric Surgical Nurses Association Conference
Represented CDH at the 2017 Global Rare Disease Conference
Represented CDH at the 2017 Canadian Organization of Rare Disorders Conference
Represented CDH at the 2017 British Pediatric Surgical Association Conference
Represented CDH at the 2017 ELSO Conference
Represented CDH at the 2017 Annual World Orphan Drug Congress
Represented CDH as a Rare Disease Advocate Charity on Capitol Hill
Represented CDH at the 2017 Rare Diseases and Orphan Products Breakthrough Summit
Represented CDH at the 2017 RARE Patient Advocacy Summit
Represented CDH at the 2017 Scientific Symposium at the 2nd Congress of jENS
Participated in the National Institutes of Health, NICHD Kids First Database Planning Conference
Mentored 4 new charities, including a new CDH charity
Participated in the 2017 Pharma Pricing Conference
Participated in the 2017 Rare Orphan Drug Conference as a Patient Advocacy Organization
Participated in the 2017 Pharma Pricing & Market Access Conference
Building relationships with vaccine and pulmonary drug creators
Joined ELSO, international ECMO Organization
Joined National Organization of Rare Disorders
Joined International Organization of Rare Disorders
Joined Canadian Organization of Rare Disorders
Joined Indian Organization of Rare Disorders
Joined Austrian Organization of Rare Disorders
Started research projects with 3 CDH Research Centers
Attending the University of Texas CDH Day in Houston
Gave 2 television interviews, including helping with episode of “Crime Watch Daily”
Raised CDH Awareness in “Save the Cherubs” photos in 36 states and 11 countries
2017 Combined Federal Campaign charity
Business Networking International charity
National Association of Professional Women member
Joined Pacific Association of Pediatric Surgeons Conference Planning Committee
Gave over 25 speeches locally on CDH
New CDHi Office Manager
1 new office intern
Niagara Falls lit up for April 19th
Sails of Light in Vancouver lit up for April 19th
Science World in Vancouver lit up for April 19th
Mercedes-Benz Superdome in New Orleans lit up for April 19th
Legislature Building in Victoria, BC lit up for April 19th
CN Tower in Toronto lit up for April 19th
Telus Spark in Calgary, AB lit up for April 19th
The High Level Bridge in Edmonton, AB lit up for April 19th
Brant Street Pier in Burlington, ON lit up for April 19th
WoodmenLife Tower in Omaha lit up for April 19th
Peace Bridge in Buffalo, NY lit up for April 19th
BC Place lit up for April 19th
Calgary Tower lit up for April 19th
Reached over 35,000 Facebook Fans
Reached 77,000 posts on the CDH Forums
Participated in National Children’s Memorial Day
Participated in #GivingTuesday
Over 30 new videos
Won 2017 Top-Rated NonProfit Award from GreatNonprofits.com
Won 2017 GuideStar Gold charity award
CHERUBS Vendor Event
April 19th – Congenital Diaphragmatic Hernia Awareness Day
Niagara Falls lit up for April 19th
Salt Lake Bees Baseball CDH Awareness Night
Dress Down Fundraisers
Virtual Candles & Snowflakes Fundraiser
Virtual CDH Ribbons Fundraiser
Lizzy’s 10k Annual Walk for CHERUBS in Ontario, Canada
Canada CDH Action Day Gathering
Creative Canvas Fundraiser
Pampered Chef Fundraiser
Tastefully Simple Fundraiser
Usborne Book Fundraiser
Eli’s Run in Wilmington, North Carolina
CHERUBS Annual Ohio Picnic
Melaeuca Fundraiser
Brady Thomas Golf Tournament
Justyce for Kids Fundraiser
Paint Nite Fundraiser
The Second Chance 80’s Dance
2nd Annual Sing for CHERUBS
Car Decals Fundraiser
Carshow Carnival
Girlfriends & Gifts Holiday Charity Benefit
CDH Research Survey Participation Drive
Halloween Candle Sale
CDH Bracelet Benefit
Shine On! Benefit
Northeast Mustang Meet
Younique Fundraiser
Games for James
Make a Memory Travel Fundraiser
Honey and Lace CHERUBS Fundraiser
Magical Elements Fundraiser
Cinco de Mayo Fundraiser
CDH 5k on the Boardwalk
DSNA CHERUBS 5K and Strike Out CDH Fundraiser
CDH FUNdraiser
Fundraising Friday!
Brewen’s Bombs Fundraiser
Jamberry Fundraiser for CHERUBS
Perfectly Posh Fundraiser
Texas CDH Awareness Picnic
Missouri CHERUBS Picnic
Buffalo Wild Wings Event
Harvest Pearls Fundraiser
Kalli LulaRoe Fundraiser
Virtual 5k
Utah Chick-Fil-A Fundraiser
Shopping With Cherub Charlotte Fundraiser
Dancing with Reese Fundraiser
Usborne Books Event
Cherub Lindsey’s CDH Fundraiser!