Meet the Partners: Dawn Ireland

 

Dawn Ireland is the President and Founder of CDH International US and leads NGOs for the organization in Canada, the United Kingdom, Singapore, the Netherlands, Hong Kong, and Switzerland.

She is also a founding member of the Surgical Anomalies Research Alliance (SARA), the Worldwide Rare Advocacy Partnership (WRAP), Rare Advocacy Movement (RAM), the Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO), a public speaker, and active in the rare disease world as a patient advocate and patient registry expert.

Dawn founded the world's largest charity for Congenital Diaphragmatic Hernia in 1995 as a grassroots organization and led it to be the most successful NPO of its kind. Through her leadership, CDH International has helped over 7000 families in 84 countries, found a voice on Capitol Hill, raised awareness on national media, created relationships with hospitals and celebrities, pushed for more funding through NIH, created and funded support services and information for families, bought together with the global CDH community, published medical data and raised over $2 million. Currently, she is a member of many pediatric surgery associations and is working with the World Health Organization to help create global standards of care for structural birth defects.

She has also laid the foundation for and/or assisted with creating 11 other CDH charities and 4 charity alliances. In addition, she is on committees at NICHD, the Global Initiative for Children's Surgery, and the G4 Alliance.

She is a member of Global Genes, NORD, EURORDIS, the G4 Alliance, the UN Civil Society Team, Rare Diseases International, Genetic Alliance UK, CORD, ELSO, WOFAPS, and many other associations for rare diseases and pediatric surgery. She has a keen interest in ensuring that all children in LMICs receive surgical care.

A Point of Light Presidential Award Winner, Dawn has been repeatedly nominated for many awards for her dedication and hard work in the fight against Congenital Diaphragmatic Hernia.

Dawn is honored to mentor many other cause charities, and she was the first charity leader to set up a 3-prong cause agenda of research, awareness, and support 25 years ago.

In addition to her non-profit work, Dawn is also a paid industry Consultant on Patient Advocacy specializing in navigating the patient landscape and building collaborations between stakeholders. She is also a paid Inspirational Speaker sharing her experiences overcoming tragedies and obstacles to build the world's largest and leading charity for Congenital Diaphragmatic Hernia.

On the personal side, Dawn was the patient advocate for her son, Shane, born with Congenital Diaphragmatic Hernia. He survived for 6 and a half years, during which she gave medical care and advocated for better medical care for her very disabled child. For over 2 years, Shane was on a ventilator and oxygen. He had a feeding tube/button and was blind and deaf for most of his life. He never spoke.

She continues to work to save other children like Shane.

Meet the Partners: Caryl Harris

Caryl Harris co-founded Avery's Hope with her husband, Eric. Named for their beautiful, and beautifully rare, grandson. Avery's Hope's mission is to "pay it forward" to other families whose children have rare gastrointestinal diseases. The organization’s mission is to assist rare, ultra-rare, and undiagnosed pediatric GI patient families with out-of-pocket and insurance denied expenses.

Caryl is a founding member of WRAP (Worldwide Rare Advocacy Partnership) collaborating with other rare disease advocates around the world on issues facing the rare disease community.

Caryl is a former member of RAM - Rare Advocacy Movement. RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts and other rare disease stakeholders.

Caryl, as well as Avery’s Hope, is a member of the National Organization for Rare Disorders and is a representative for Avery’s Hope with the EveryLife Foundation for Rare Diseases, and Global Gene’s Rare Patient Alliance. She also serves as a Patient Ambassador for Illumina, Inc., a leader in whole genome sequencing technology.

Caryl has not yet retired from her “day job” and is a Bicycle Specialist for goHunterdon - Promoting Sustainable Transportation in Hunterdon County, NJ, Caryl is an avid cyclist, an artist, a wife, a mom to three amazing young men, a grandma, and "Ya Ya"; to an amazing young man living with Microvillus Inclusion Disease.

Publications and Presentations:

What It’s Like to Watch Your Grandchild with a Rare Disease

Avery’s Diagnostic Journey: Two presentation given to Illumina employees, 2020 and 2021

Financial Resources for Rare Pediatric GI Patient Families: A presentation to the GI Social Work Department at Children’s Hospital of Philadelphia 2021

Advocacy Panel at the 2019 Medical Affairs Conference, Philadelphia