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2018 CDH International Year in Review

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2018 CDH International Year in Review

Dear CDH International Members and Supporters,

It has been another banner year here at CDH International!

We have spent all of 2018 very much focused on research and global awareness and our hard work has paid off with the support of the World Health Organization, hospitals around the world and our supporters.

We are excited to branch out into Europe officially to participate in more research opportunities, work with other CDH non-profits and much more that we have not yet made public.

These are just some of the things we have accomplished this year at CDH International with the hard work of our members, volunteers, staff and Boards:

  • Visited the World Health Organization
  • Began work with the WHO on a new global Standard of Care for CDH that includes standard measurements of mortality and morbidity. Including several other like defects to help more children around the world
  • Began to work with Global Initiative for Children’s Surgery (GICS)
  • Began formation of a new NGO (non-profit) branch in the United Kingdom
  • Began formation of a new NGO (non-profit) branch in Italy
  • Welcomed 8 new Medical Advisory Board Members
  • Collaboration with 1000’s of patient families and doctors on new CDH Parent Reference Guide
  • Multi-Disciplinary committees for CDHi Created
  • Created new CDH International Guide
  • New CDHi Ambassador Program started
  • Participated in Fetal Medicine Workshop in London
  • Represented CDH at World Health Summit in Berlin
  • Represented CDH at BioData World Congress in Basel, Switzerland
  • Keynote Speaker at Surgery Conference in Bucharest, Romania
  • Represented CDH at the XXXV Congresso Brasileiro de Cirurgia Pediátrica in Brazil
  • Represented CDH at the CDH International Attends AAP 2018 in Orlando
  • Represented CDH at the Bio Summit 2018 in Washington DC
  • Represented CDH at the International Symposium on Pediatric Research in Taormina, Italy
  • Keynote Speaker at Surgery Conference in Osaka, Japan
  • Keynote Speaker at 2nd Annual EuroSciCon World Congress on Pediatrics Amsterdam
  • Spoke at 2018 Global Genes Summit in Irvine, CA
  • Attended the 29th Annual ELSO Conference for ECMO
  • Represented CDH at Orphan Drugs & Rare Diseases Conference in Boston
  • Toured 3 children’s hospitals in London
  • Toured 3 children’s hospitals in Italy
  • Represented CDH at the International Conference on Clinical Neonatalogy in Turin
  • Represented CDH at 51st Annual Meeting of Pacific Association of Pediatric Surgeons in Sapporo, Japan
  • Video Interview with YouTube Personality “Q The Nurse”
  • Represented CDH at Euro ELSO Conference in Prague
  • Keynote Speaker at Pediatrics 2018 Conference in Madrid
  • Attended the British Pediatric Surgical Association’s 2018 Conference
  • Attended the 2018 ACDHO Conference hosted by La Vida Con Hernia Diafragmática Congénita Conference in Barcelona
  • Represented CDH at the 7th International Conference on Clinical Neonatology
  • Visited the CDH Lab at Massachusetts General Hospital
  • CDH International is the NIH Kids First DRP Featured Charity for July
  • Awarded CDH Charity Accreditation Award to APEHDia
  • Awarded CDH Charity Accreditation Award to La vida con Hernia Diafragmática Congénita
  • Represented CDH at the University of Zurich Rare Disease Summer School
  • Represented CDH at 22nd International Conference on Neonatology and Perinatology in Frankfurt, Germany
  • CDH International Featured by Rare Revolution Magazine
  • Represented CDH at National Nurse Networking Event in DC
  • CDHi families and Board Members met with Senators & Representatives on Capitol Hill
  • Represented CDH at Rare Diseases 360 in Vienna, Austria
  • Represented CDH at Attends the World Orphan Drug Congress in DC
  • Spoke at the GICS conference in India
  • CDHi President represents CDH in Rare Advocacy Movement
  • Led Round Table at the World Pharma Pricing & Market Access Congress in London
  • Represented CDH at Annual APSA Conference in Palm Desert, CA
  • Represented CDH at EUPSA 2018 International Congress in Paris
  • Participated in the 2nd International Workshop on Intensive Care of the Newborn In Verona
  • Represented CDH at International Congress of Research on Rare and Orphan Diseases in Bologna
  • CDH International Joins the NICHD Kid’s First Database Team
  • CDHi Visits the Children’s Hospital of Philadelphia to Discuss Kid’s First Database for NICDH Division of the NIH
  • New “Giving Wings to CDH Awareness” Banner & Campaign
  • CDHi Vice President, Kat Haney, met with US Rep. George Holding and Majority Whip Steve Scalise to Discuss CDH Funding
  • Reached over 6400 families and medical care providers in our membership
  • Helped families and researchers in 72 countries
  • Raised over $60,000 in one day during the second annual CDH Telethon
  • Attended 3 meetings at the National Institutes of Health in Bethesda
  • 2019 CHERUBS Family Conference Planned for Nashville, TN
  • Became a member of ELSO
  • Sent out over 75 CDH HOPE Totebags
  • Helped to create new ACDHO Charter
  • Published a white paper on the need for Standard of Care
  • New CDH Crests created
  • New CDH diagrams created
  • New CDH International On-Line Store
  • 2019 Masquerading Angels Ball set in motion
  • CDH International Lobbies With Other Rare Disease Charities on Capitol Hill
  • New shirt designs
  • 100’s of new graphics
  • New branding, materials, social media, etc
  • Raised CDH Awareness in “Save the Cherubs” photos in 11 new countries
  • Reached 77,000 posts on the CDH Forums
  • Average over 1,000,000 social media reach each month
  • Participated in National Children’s Memorial Day
  • Participated in #GivingTuesday
  • Over 25 new videos created
  • Won 2018 Top-Rated NonProfit Award from GreatNonprofits.com
  • Won 2018 GuideStar Gold charity award
  • April 19th – Congenital Diaphragmatic Hernia Awareness Day
  • Virtual Candles & Snowflakes Fundraiser
  • Virtual CDH Ribbons Fundraiser
  • Lizzy’s 6th Annual Walk for CHERUBS
  • 5th Annual 2018 Northeast Mustang Meet in Memory of Skylar M. Fonseca
  • 3rd Annual Get Your Shine On Golf Tournament Fundraiser
  • CHERUBS Toronto Blue Jays Game and Family Gathering
  • Salt Lake City Bees Baseball Game for Cherubs
  • CDH Action Day in Clayton, Missouri
  • Missouri Get-Together
  • Utah Area Get-Together
  • Phoenix Area Get-Together
  • Rascals Baseball Game
  • CDH 5k in Rockaway Park, NY
  • 2018 Marathon Madness Mile Remembering Eli Willis
  • BC Legislature Building Lights Up for CDH Awareness (Victoria, BC)
  • Rogers Arena in Vancouver Lights Up for CDH Awareness Day (Vancouver)
  • Niagara Falls Lights up for CDH Awareness Day (Niagara Falls, NY)
  • Mercedes-Benz Superdome Scheduled to Light Up for CDH Awareness (Playoffs Overranked)
  • The British Columbia Parliament Building Lights Up for CDH Awareness (Victoria, BC)
  • The Alberta Legislature Building Lights Up for CDH Awareness (Edmonton, AB)
  • BC Place Lights Up for CDH Awareness (Vancouver)
  • The Sails of Light in Canada Lights Up for CDH Awareness (Vancouver)
  • Retirement Systems of Montgomery Lights Up for CDH Awareness (Montgomery, AL)
  • Retirement Systems of Mobile Lights Up for CDH Awareness (Mobile, AL)
  • Science World Lights Up for CDH Awareness (Vancouver)
  • Zakim Hill Memorial Bridge Lights Up for CDH Awareness (Charlestown, MA)
  • Calgary Tower Lights Up for CDH Awareness (Calgary, AB)
  • Bank of America Plaza Lights Up for CDH Awareness (Dallas)
  • Peace Bridge Lights up for CDH Awareness (Ontario)
  • PECO Crown Lights Building Lights Up for CDH (Philadelphia)
  • CN Tower Lights Up for CDH Awareness (Toronto)
  • Dean Cain Celebrity Video for CDH Telethon
  • Jeff Foxworthy Celebrity Video for CDH Telethon
  • Lance Moore Celebrity Video for CDH Telethon
  • Chase d’Arnaud Celebrity Video for CDH Telethon
  • Ian McElhinney Celebrity Video for CDH Telethon
  • Tawny Kitaen Celebrity Video for CDH Telethon
  • Sonja Morgan Celebrity Video for CDH Telethon
  • William Wisher Celebrity Video for CDH Telethon
  • Kate Linder Celebrity Video for CDH Telethon
  • Kim Alexis Celebrity Video for CDH Telethon
  • Kevin Sorbo Celebrity Video for CDH Telethon
  • Lil Scrappy Celebrity Video for CDH Telethon
  • Aaron Watson Celebrity Video for CDH Telethon
  • Chris Weidman Celebrity Video for CDH Telethon
  • Tori Spelling Celebrity Video for CDH Telethon
  • Bret “The Hitman” Hart Celebrity Video for CDH Telethon
  • Drew Seeley Celebrity Video for CDH Telethon
  • Chumlee Celebrity Video for CDH Telethon
  • Milena Roucka Celebrity Video for CDH Telethon
  • Hilary Shepard Celebrity Video for CDH Telethon
  • Matty Mullins Celebrity Video for CDH Telethon
  • Countess Luann de Lesseps Celebrity Video for CDH Telethon
  • Michael Campion Celebrity Video for CDH Telethon
  • Thaddeus Lewis Celebrity Video for CDH Telethon
  • Marla Maples Celebrity Video for CDH Telethon
  • Tim Murphy Celebrity Video for CDH Telethon
  • Action Jaxon Celebrity Video for CDH Telethon
  • Paul Amos Celebrity Video for CDH Telethon
  • Juliet Simms Celebrity Video for CDH Telethon
  • Bob “The Blade” Robinson” Celebrity Video for CDH Telethon
  • Kristy Swanson Celebrity Video for CDH Telethon
  • Chris Rankin Celebrity Video for CDH Telethon
  • Lee Montgomery Celebrity Video for CDH Telethon
  • Alabama Proclamation
  • Alaska Proclamation
  • Arizona Proclamation
  • Arkansas Proclamation
  • Arkansas town of Texarkana Proclamation
  • Arkansas town of Vilonia Proclamationa
  • Delaware Proclamation
  • Florida Proclamation
  • Georgia Proclamation
  • Georgia town of Folkston Proclamation
  • Hawaii Proclamation
  • Idaho Proclamation
  • Illinois Proclamation
  • Illinois town of Fairview Heights Proclamation
  • Indiana Proclamation
  • Kentucky Proclamation
  • Louisiana Proclamation
  • Maine Proclamation
  • Maryland Proclamation
  • Michigan Proclamation
  • Minnesota Proclamation
  • Mississippi Proclamation
  • Mississippi town of Gautier Proclamation
  • Missouri Proclamation
  • Montana Proclamation
  • Nebraska Proclamation
  • New Hampshire Proclamation
  • New Mexico Proclamation
  • Nevada Proclamation
  • North Carolina Proclamation
  • North Dakota Proclamation
  • Ohio Proclamation
  • Oklahoma Proclamation
  • Pennsylvania Proclamation
  • Rhode Island Proclamation
  • South Carolina Proclamation
  • Tennessee Proclamation
  • Texas Proclamation
  • Utah Proclamation
  • Vermont Proclamation
  • Washington Proclamation
  • West Virginia Proclamation
  • Wisconsin Proclamation
  • Games for James Fundraiser
  • Lulu Rose Fundraiser
  • Dancing with Reese Fundraiser
  • Sweet Scents Fundraiser
  • Cards for a Cause
  • Team Lily CDH Fundraiser
  • T-Shirt Design Contest
  • CDH Awareness Quilt Auction
  • Yarn for CHERUBS Fundraisr
  • Snapdragon Home Decor for Cherubs
  • Race to Indy Fundaiser
  • Glory Days for Cherubs Fundraiser
  • #GivingTuesday for Cherubs Fundraiser!
  • 2018 CDH Telethon In loving memory of Juan Mateo Fundraiser
  • 2nd Annual Sing for CHERUBS
  • Abdy’s Birthday Fundraiser
  • Abigail’s Birthday Fundraiser
  • Alexandra’s Birthday Fundraiser
  • Ali’s Birthday Fundraiser
  • Ali’s Birthday Fundraiser
  • Alice’s Birthday Fundraiser
  • Alicia’s Birthday Fundraiser
  • Alyssa’s #GivingTuesday Fundraiser
  • Amanda’s Birthday Fundraiser
  • Amy’s Birthday Fundraiser
  • Andrea’s Birthday Fundraiser
  • Andy’s Birthday Fundraiser
  • Andy’s Birthday Fundraiser
  • Angie’s Birthday Fundraiser
  • Ashley’s Birthday Fundraiser
  • Aubrey’s Birthday Fundraiser
  • Audra’s Birthday Fundraiser
  • Becca’s #GivingTuesday Fundraiser for CDH International
  • Brady Thomas Golf Tournament
  • Brandon’s Birthday Fundraiser
  • Brenda Shumway’s Birthday Fundraiser
  • Brenda’s Birthday Fundraiser
  • Brett’s Birthday Fundraiser
  • Brianna’s Birthday Fundraiser
  • Brittany’s Birthday Fundraiser
  • Brittany’s Birthday Fundraiser
  • Canada CDH Action Day Gathering
  • Car Decals Fundraiser
  • Carshow Carnival
  • CDH Research Survery Participation Drive
  • Chrissy Justine Hastert’s Fundraiser
  • Christy’s Birthday Fundraiser
  • Collin’s Birthday Fundraiser
  • Corinne’s #GivingTuesday Fundraiser
  • Corinne’s #GivingTuesday Fundraiser
  • Creative Canvas Fundraiser
  • Daniel’s Birthday Fundraiser
  • Darlene Brannan’s Fundraiser
  • Dave’s Birthday Fundraiser
  • Dawn’s fundraiser for CDH International for #GivingTuesday
  • Dawna’s Birthday Fundraiser
  • Deborah’s Birthday Fundraiser
  • Diana’s Birthday Fundraiser
  • Earl’s Birthday Fundraiser
  • Elaine’s Birthday Fundraiser
  • Elaine’s Birthday Fundraiser
  • Elisabeth’s Birthday Fundraiser
  • Elizabeth’s Birthday Fundraiser
  • Ellie’s birthday fundraiser
  • Ethan’s Birthday Fundraiser
  • Fundraiser for CHERUBS in honor of Kai Luke Lin-DeShetler
  • Gaby’s Birthday Fundraiser
  • Ginny’s Birthday Fundraiser
  • Girlfriends & Gifts Holiday Charity Benefit
  • Halloween Candle Sale
  • Hannah’s Birthday Fundraiser
  • Hell and Back for CDH Fundraiser
  • Help Raise Money in Memory of Thomas Fundraiser
  • Hope’s Birthday Fundraiser
  • Hope’s fundraiser for CDH International
  • In Honor of Maelig Fundraiser
  • In loving memory of Juan Mateo Fundraiser
  • In memory for Payton #GivingTuesday Fundraiser for CDH International
  • In memory of Kasey Fundraiser
  • Indsamling til en sag, som betyder noget for mig
  • Jacqui’s Birthday Fundraiser
  • Jaime’s Birthday Fundraiser
  • Jana’s Birthday Fundraiser
  • Jarah’s Birthday Fundraiser
  • Jason’s Birthday Fundraiser in memory of Gunner and Levi
  • Jen’s Birthday Fundraiser
  • Jennifer’s CHERUBS Birthday Fundraiser
  • Jenny’s Birthday Fundraiser
  • Jess’s birthday fundraiser
  • Jessi’s Birthday Fundraiser
  • JoAnne’s Birthday Fundraiser
  • JoAnne’s Birthday Fundraiser
  • Judi’s Birthday Fundraiser
  • Julie’s Birthday Fundraiser
  • Justin’s Birthday Fundraiser
  • Justyce for Kids Fundraiser
  • Kaitlyn’s Birthday Fundraiser!
  • Kali’s Birthday Fundraiser
  • Karen’s #GivingTuesday Fundraiser for CDH International
  • Katie’s Birthday Fundraiser
  • Kayla’s Birthday Fundraiser
  • Kayla’s fundraiser for CDH International in memory of Harlie Marino
  • Kelly’s Birthday Fundraiser
  • Kelsey’s Birthday Fundraiser
  • Kevin’s Birthday Fundraiser
  • Kim’s Birthday Fundraiser
  • Kimberly’s Birthday Fundraiser
  • Kimmie’s Birthday Fundraiser
  • Kirstin’s Birthday Fundraiser
  • Kristin’s #GivingTuesday Fundraiser
  • Lacey’s Birthday Fundraiser
  • Letty’s Birthday Fundraiser
  • Linda’s Birthday Fundraiser
  • Lisa’s Birthday Fundraiser
  • Lori’s Birthday Fundraiser
  • Mariah’s Birthday Fundraiser
  • Maribel’s Birthday Fundraiser
  • Maribel’s Birthday Fundraiser
  • Mary’s Birthday Fundraiser
  • Megan’s Birthday Fundraiser
  • Melaeuca Fundraiser
  • Melanee’s Birthday Fundraiser
  • Melinda’s Birthday Fundraiser
  • Melissa’s #GivingTuesday Fundraiser
  • Michele’s Birthday Fundraiser
  • Michelle’s Birthday Fundraiser
  • Morgan’s Birthday Fundraiser
  • Najah Elaine Major’s Birthday Fundraiser
  • Nicki’s Birthday Fundraiser
  • Nina’s Birthday Fundraiser
  • Northeast Mustang Meat
  • Paint Nite Fundraiser
  • Pampered Chef Fundraiser
  • Patricia’s Birthday Fundraiser
  • Patty’s Birthday Fundraiser
  • Peggy’s #GivingTuesday Fundraiser
  • Preston’s Birthday Fundraiser
  • Rachel’s Birthday Fundraiser
  • Raising Money For a Cause I Care About by Jamillah Iesha Burns
  • Raising Money For a Cause I Care About by Taylor Stetler
  • Raising money for CDH families. In Honor of Anderson & Memory of Riley
  • Raising Money for CHERUBS, by Patricia Guevarez
  • Raising Money For our CHERUBS by Lauren Petersen Fundraiser
  • Randy’s Birthday Fundraiser
  • Renae’s Birthday Fundraiser
  • Renee’s #GivingTuesday Fundraiser
  • Rhonda’s Birthday Fundraiser
  • RoEu’s Birthday Fundraiser
  • Roxana’s Birthday Fundraiser
  • Sam’s Birthday Fundraiser
  • Sara’s Birthday Fundraiser
  • Savannah’s Birthday Fundraiser
  • Save The Cherubs – A Fundraiser in Honor of our daughter Madison Blair Fundraiser
  • Shana’s Birthday Fundraiser
  • Shannon’s Birthday Fundraiser
  • Shawn Sandé’s Birthday Fundraiser
  • Sheila’s Birthday Fundraiser
  • Shelby’s Birthday Fundraiser
  • Sherry’s Fundraiser for CDH International
  • Shine On! Benefit
  • Signe sin bursdagsinnsamling for CDH International
  • Sina’s Birthday Fundraiser
  • Supporting CDH Families by Madison Leonard
  • Tara’s Birthday Fundraiser
  • Tastefully Simple Fundraiser
  • Taylor’s Birthday Fundraiser
  • Teresa’s Birthday Fundraiser
  • Tinnie’s Birthday Fundraiser
  • Tonia’s Birthday Fundraiser
  • Tony’s Birthday Fundraiser
  • Tracy’s #GivingTuesday Fundraiser for CDH International
  • Trisha’s Birthday Fundraiser
  • Usborne Book Fundraiser
  • Vickie’s Birthday Fundraiser
  • Vicky’s #GivingTuesday Fundraiser
  • Younique Fundraiser

In 2019, we will continue our work in research and awareness, but also push a new momentum in helping CDH patients and families directly on a global level.  This starts with our new CDHi Ambassador Program and new funds for services in our CHERUBS division.

It is continually an honor to work with all of you, to serve all the families who need us, to help save these children. We look forward to all the incredible progress that 2019 will bring and thank you for allowing us to a part of your families and your journeys in fighting CDH.

Happy New Year from everyone at CDHi and CHERUBS!

http://www.cdhi.org
http://www.cherubs.org/

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