The Children’s Interstitial Lung Disease Foundation had its beginnings with one dedicated doctor and five committed families.

Dr. Robin Deterding of The Children’s Hospital Denver, and her colleagues recognized the needs of the families affected by chILD and the potential impact of a combined effort between physicians and families focused on finding answers and successful treatment options. She succeeded in getting funding from an R-13 Institute of Health grant for the first chILD medical conference–held in conjunction with the Rare Lung Disease Consortium. Five families that had been impacted by chILD were invited to participate.

Through this first conference, these five families took the challenge and worked together to set goals and a strategy to improve the lives of other families affected by chILD. On March 27th, 2004 their vision became a reality and the chILD Foundation was established. During this conference, our logo, the pinwheel, was selected as the iconic image for chILD from a picture of Alex Porta.

With donations from friends and family members, the chILD Foundation began a research program that continues to grow. Since 2010, the foundation has co-sponsored several research grants with the American Thoracic Society, have partnered with International chILD groups to fund research, and have been awarded an exome sequencing grant from the Rare 99X project. In addition, our Research Network has launched a patient registry to track these rare patients and create opportunities for longitudinal studies and future clinical trials.

In 2024, we celebrate our 20th Anniversary as an organization. We look forward to serving this community for the next 20 years and beyond.

Empowering Children To Breathe, and Families to Hope

The chILD Foundation is a 501(c)(3) non-profit organization whose mission is to provide compassionate support, education, and hope to children and families affected by these life-altering diseases as well as to accelerate research to find effective treatments and cures for all forms of Children’s Interstitial Lung Disease (chILD).

chILD is not a single disease but a group of lung disorders for which there is no cure, and limited treatment options. The prognosis for children affected is varied by diagnosis, but many have high morbidity and some have high mortality rates. Without lung transplantation, the prognosis for some of these children is poor. chILD meets the qualifications as an ultra-rare disease, with a U.S. patient population estimated to be fewer than 10,000. There’s presently limited knowledge of the chILD disorders, even among pediatric pulmonologists.

The chILD Foundation is committed to delivering the financial resources required to make real progress towards a cure, and to improving the quality of life for kids and families impacted by chILD. Fundraising is the lifeblood for our Mission, and the only means by which we can give the breath of life to kids afflicted with chILD.

• Guiding Principles

1. We believe that all pediatric lung disease patients deserve access to accurate diagnoses, effective treatments, and hope for a cure.
2. We believe that, while individual chILD disorders are extremely rare, collectively, this group of diseases comprises a significant number of pediatric lung disease patients that are under-represented in the research and medical communities.
3. We believe that working together to support all forms of chILD is the most effective way to advocate for these kids. Together we are stronger and we will work tirelessly until we have found cures for all forms of chILD.

• Strategic Objectives

In taking the lead in this fight, the chILD Foundation is focusing energy on four fronts:

1. Funding Research for Effective Treatments and Cures: This is our most critical effort, because winning the fight can only be achieved with intense medical research; and because chILD has dozens of variants, research must be conducted on multiple fronts
2. Providing Resources to Families: For a child suffering from a rare lung disease, a vital component of treatment is the daily care and emotional support of a loving family. The foundation serves as a reservoir and conduit for information on the various disorders, treatment options, medical specialists, research studies, Centers of Excellence and other content to help families cope and provide the most effective support for their children.
3. Documenting Patients and Disease Variations: A critical part of the battle is developing a more thorough understanding of the nature and scope of this family of ultra-rare diseases. Research is central to this effort, but it also means building a central case registry of all known patients, and thoroughly documenting all known chILD variations and their symptoms, diagnosis and treatments.
4. Educating the Medical Community: As breakthroughs are achieved, it is essential to present new treatment and drug therapy knowledge to physicians, researchers and other medical professionals to broaden the understanding of these rare conditions, to diagnose these conditions accurately and to stimulate additional advocacy, funding and support.