Our History

Alex Porta spinning a pinwheel with a puff of air from his new lungs for the St Louis Children’s Hospital Transplant Center in 1999. While Alex lost his battle with chILD, his legacy lives on  in the Foundation.

Alex Porta spinning a pinwheel with a puff of air from his new lungs for the St Louis Children’s Hospital Transplant Center in 1999. While Alex lost his battle with chILD, his legacy lives on in the Foundation.

The Children’s Interstitial Lung Disease Foundation was established on March 27th, 2004 by one dedicated doctor and five committed families. The Mission of this not-for-profit organization is to accelerate research to cure all forms of Children’s Interstitial and Diffuse Lung Disease (chILD) and to provide compassionate support, education, and hope to children and families affected by these life-altering diseases.

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 for children with chILD. She took the initiative to get the first chILD medical conference funded by the R-13 National Institute of Health grant which was 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. To read more about the Legacy of the Pinwheel, click here.

The chILD Foundation is proud to report that with the donations from friends and family members, we have begun a research program that is growing from year to year. 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. We have pledged continued support of the patient registry including funds for data entry and annual scientific  reviews to promote this critical tool for finding cures for the chILD diseases.

Today, the chILD Foundation continues its work to carry out its mission. Sadly, there are many more chILD families. But, as these new families have worked together with the foundation, they have found support, answers to their questions and hope that future research will find successful treatments and, ultimately, cures for their children.

In 2014, we will be celebrating our 10th Anniversary. In these first 10 years, many milestones were achieved and we are proud of our successes. However, we have many more to pass to find cures for our chILD patients and look forward to the next 10 years!