The funding available for research is very limited for chILD and we have many challenges. First, the chILD diagnoses are rare. Secondly, chILD is not a single diagnosis, so more money is needed to investigate all of the processes that lead to the various forms of chILD. We believe there is a lot of crossover in our efforts and by building a strong research infrastructure, we can make a difference for all of our chILD patients and their families.
Our Children’s Interstitial and Diffuse Lung Disease Research Network (chILDRN) has done amazing work with very little funding. They have created a state of the art research database to track chILD cases and are actively uploading patients. The chILDRN is creating relationships with patient groups worldwide to maximize their research efforts. They have published clinical guidelines for diagnosing and treating chILD and many are performing cutting edge, on-going research with limited outside grant opportunities. However, to find effective drugs and cures for these disorders, we need funding for longitudinal research, genetic sequencing, general science research and clinical trials.
Our families have been passionate about fundraising for chILD and we have been fortunate to have strong relationships with the American Thoracic Society (ATS) Foundation and our sister organizations chILD Lung Foundation UK and Pequenos Pulmones that have made it possible to fund over $300,000 in research over the past few years. Through the chILD partnerships and matching funds and grant oversight from the ATS foundation, we have made our family fundraising efforts stretch farther. We look forward to expanding our research program and have set a goal of finding a cure for at least one chILD disorder by 2017.
We need your help to find cures for this devastating group of diseases.