A Global Initiative to Stop Congenital Diaphragmatic Hernia Dawn Ireland, President
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Nonprofit Impact Report 2020 A global initiative to stop Congenital Diaphragmatic Hernia Dawn Ireland, President A Note From Dawn Ireland, President Dear CDH International Members and Supporters, We spent our first 24 years blazing the path for CDH charities and creating a global community for the benefit of our kids. And then came Covid and things could’ve grinded to screeching halt. Many charities folded in 2020… CDH International did not. We held our 2020 CDH Telethon as our President, Dawn Ireland, herself was battling Covid while on camera for 12 hours. This fall, Tracy Meats, head of our Support Department, had a heart attack and still continued to try to work just a week later. Our big 25th Anniversary CDH Conference in Toronto was cancelled. Research conferences held virtually. Volunteers and Board Members quit because they couldn’t handle the pressures of 2020 and charity work too. Donations fell to 50% of the previous year but with the help of our amazing, Fundraising Team, lead by Nicolle Colvin, fundraisers increased by 74% during a global pandemic! We made it. And we grew. In July, CDH International became a registered research non-profit organization in the UK after 25 years of volunteers and support. In December, CDH International became a registered non-profit organization in Hong Kong, Singapore, the Netherlands and Switzerland. CDH International was first envisioned sitting beside a baby boy’s hospital bed in 1993. It became a reality in the form of CHERUBS in 1995. Now, we are the world’s oldest, largest and leader in the fight against Congenital Diaphragmatic Hernia. And we’ve done it all on our own, while lifting others up, learning along the way and always, always putting the children first. What an incredible first 25 years it's been. Dawn Ireland President CDH International By The Numbers 2020 CDH International created 5 NGO's in the United Kingdom, Switzerland, Hong Kong, the Number of new NGOs Netherlands and Singapore in 2020 CDH International became a 25 registered nonprofit in 1995 and is the world's oldest charity for Years Serving the CDH Congenital Diaphragmatic Community Hernia. Families served and 6850 researchers who are official members of CDH International Members and who participate in the CDH Patient Registry. We have made an even bigger 74 impact globally in the fight to help more families affected by Countries CDH. Our Mission CDH International is dedicated to finding the cause, prevention, and best treatments for Congenital Diaphragmatic Hernia while also supporting affected patients and families. Congenital Diaphragmatic Hernia CDH occurs when the diaphragm fails to fully form during pregnancy, allowing organs to migrate from the abdominal cavity into the chest cavity and thereby inhibiting lung growth. CDH strikes 1 in every 2500 babies, which equals 1600 babies every year in the United States. Every ten minutes, a baby is born with CDH. Fifty percent of babies diagnosed with Congenital Diaphragmatic Hernia do not survive. The cause is unknown. CDH International was known as "CHERUBS" until 2017 2020 Executive Board of Directors 2020 Patient Advisory Board Dawn Ireland, President Hope Clyde Katherine Haney, Vice-President Nicolle Colvin M. Shane Perry, Esq., Secretary Josh Hensley Tara Henderson Laura Henderson Tracy Meats Shelly Moore Warren Sumner Amanda Plakholm James Kornegay Darlene Silverman Rhonda Montague Mary Kate Brenner 2020 Medical Advisory Board Paul Losty, MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) – Liverpool University, UK N. Scott Adzick, MD, MMM, FACS, FAAP– Children’s Steadman McPeters, CPNP – Huntsville Alabama, Hospital of Philadelphia Pediatric Surgery Nurse Clinician Kristin Aigner, RN, BSN - OSF St. Francis Medical Center Doug Miniati, MD – University of California, San Francisco Priscilla Chiu, MD – Sick Kids University of Toronto Steadman McPeters, CPNP – Pediatric Surgery Nurse Wendy Chung, MD, PhD - Columbia Presbyterian / Clinician / Huntsville Alabama DHREAMS Giovanna Riccipetitoni, MD - Ospedaledei Bambini Buzzi, Jan Deprest, MD, PhD - University Hospital Gasthuisberg, Milan Leuven, Belgium Henry Rice, MD - Duke University Medical Center Patricia Donahoe, MD – Massachusetts General Hospita Dick Tibboel, MD, PhD – Erasmus University MC – Sophia Mahmoud El Fiky, MD - Cairo University Children’s Hospital NL Gabrielle Kardon, PhD – University of Utah Jay Wilson MD – University of Texas Richard Keijzer, MD, PhD, MSc - University of Manitoba Naomi, Wright, MD – Global Initiative in Pediatric Surgery, and Children's Hospital Research Institute of Manitoba London, UK Matthew T. Harting, MD - University of Texas Medical August Zani, MD - Toronto Sick Kids Hospital School at Houston, “A kind gesture can reach a wound that only compassion can heal.” Steve Maraboli USA / Internationally United Kingdom Switzerland 3650 Rogers Rd #290 77 Victoria Street, Box 135 c/o Chapel & York Switzerland Association, 4 Rue Charles- Wake Forest, NC 27587 London SW1H 0HW Bonnet, P.O. Box 399,1211, Geneva 12, Switzerland USA United Kingdom www.cdhintl.ch www.cdhi.org www.cdhi.uk [email protected] [email protected] [email protected] Phone - +41 22 57 54 171 +1 919-610-0129 +44 20 3966 5346 CDH International c/o Chapel & York Switzerland Association US 501(c)III #56-1916661 Registered UK Charity no. 1189819 is a tax-exempt not-for-profit association governed by Articles @cdhintl @cdhiuk 60 et seq. of the Swiss Civil Code. @cdhiuk @cherubs http://www.facebook.com/cdhiuk @cdhiswitzerland @cdhinternational @cdhiswitzerland http://www.facebook.com/cdhintl http://www.facebook.com/cdhiswitzerland http://www.facebook.com/cdhsupport Netherlands Hong Kong Singapore c/o Stichting Chapel & York Foundation CDH International, c/o Hong Kong Foundation for Charities c/o Chapel York SG Foundation, 138 Robinson Road, 18- Netherlands Markerkant 13 10 1314 AN Limited, Unit B, 19/F, Queen’s Centre, 03 Oxley Towers, Singapore 068906 Almere Noord Holland The Netherlands 58-64 Queen’s Road East, Wanchai, Hong Kong cdhi.org/singapore www.cdhi.nl cdhi.org/hongkong [email protected] [email protected] [email protected] +65 9223 7069 +44 20 3966 5346 CDH International, c/o Hong Kong Foundation for Charities CDH International, c/o Singapore Foundation for Registered UK Charity no. 1189819 Limited Registration Number 65159428-000 Charities Ltd | Registration Number 65159428-000 @cdhinl @cdhinl @cdhihongkong http://www.facebook.com/cdhintl @cdhihongkong @cdhisingapore http://www.facebook.com/cdhhongkong @cdhisingapore http://www.facebook.com/cdhsingapore Finances 2020 Totals Annual Financial Report for CDH International Income - $249,798 2020 Income Expenses - $220,840 Gifts In Kind: 1.2 % Awareness Fund: 0.6 % Family Assistance Fund: 2.6 % Research Fund: 20.4 % Scholarship Fund: 0.0 % Fundraisers: 14.7 % General / Support Fund: 60.4 % 9% Overhead 8% operational 1% fundraising 2020 Expenses Operating Costs: 8.4 % Lobbying: 0.0 % Research Fund: 29.6 % Awareness Fund: 21.8 % Fundraising: 0.6 % No government funding. Family Assistance Fund: 8.4 % Scholarship Fund: 0.0 % Support Fund: 31.1 % No grants over $5000. No sponsorships over $5000. Fiscal year January 1, 2020 - December 31, 2020 CDH families powered. All tax returns and financials can be found at www.cdhi.org CDHi 2020 Year In Review Major Milestones CDH International becomes NGO in the United Kingdom CDH International becomes NGO in Hong Kong CDH International becomes NGO in Switzerland CDH International becomes NGO in the Netherlands CDH International becomes NGO in Singapore CDH International presents research at the CDH Study Group meeting CDH Phone App Created CDH Medical Center Map added to the App National CBS Interview 25th Anniversary Yearbook 2020 CDH Telethon CDH International Wins 2020 Transparency Award from Guidestar CDH International Joins Canadian Organization for Rare Disorders CDH International Joins EURORDIS CDH International Joins Global Genes RARE Foundation Alliance CDHi Welcomes Co-Founder, Rhonda Montague, to the Executive Board CDHi Welcomes James Kornegay to the Executive Board CDH International Awards Scholarship to Serena Rush CDHi hires new Office Manager The 2020 CDH International UnGala 2020 National Children’s Memorial Day Virtual Memorial 2020 Virtual CDH Ribbons CDH Awareness Spirit Week #snowangelchallenge for CDH CDHi Works With Arianna’s CDH Foundation for CDH HOPE Totebags Storytime with Heidi-Marie Aja Evans Helps Celebrate CDHi’s 25th Anniversary Charles Lawson Helps Celebrate CDHi’s 25th Anniversary Dean Cain Helps Celebrate CDHi’s 25th Anniversary Ernie Hudson Helps Celebrate CDHi’s 25th Anniversary Jesse Metcalfe Helps Celebrate CDHi’s 25th Anniversary Kristin Bauer Helps Celebrate CDHi’s 25th Anniversary Lolo Jones Helps Celebrate CDHi’s 25th Anniversary Melissa Gilbert Helps Celebrate CDHi’s 25th Anniversary Oscar Nuñez Helps Celebrate CDHi’s 25th Anniversary Paula Deen Helps Celebrate CDHi’s 25th Anniversary Sean Astin Helps Celebrate CDHi’s 25th Anniversary CDH Research CDH International presents research at the CDH Study Group meeting CDH International collaborates with Fondazione IRCCS Ca’ Granda, Ospedale Maggiore Policlinico Milan (Italy) and Associazione Fa.B.E.D. Famiglie di Bambini con Ernia Diaframmatica on research project into the effects of COVID-19 on Congenital Diaphragmatic Hernia patients. CDH International and the University of Toronto do a joint study on older CDH survivors Online CDH and COVID-19: An Expert Session Dr. Mahmoud El Fiky Joins CDHi Medical Advisory Board CDH International speaks at