fbpx
You Are Reading

25 Years of CDH International – 2017

0
Uncategorized

25 Years of CDH International – 2017

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!

Newsletters and Publications

2017 CDH News Archives (click Archives to view other weekly editions)

Follow @ Instagram

Follow CDH International