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 hundreds of thousands of dollars 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.
Thus, the chILD Foundation has been able to fund ground-breaking research with some of the finest minds in the field of childhood lung diseases. The success of these projects are the early salvos in our battle to improve diagnosis and treatment. We look forward to expanding our research program and have set a goal of finding a cure for at least one chILD disorder within the next few years and, ultimately to develop cures for all children who suffer from chILD.
Past Research Includes:
Darrell Kotton, MD and Laertis Ikonomou, PhD: Awarded an $80,000 grant from the chILD Foundation and the American Thoracic Society for stem cell research.
Dr. Kotton is founding Director of the Center for Regenerative Medicine at Boston University and Boston Medical Center, and The David C. Seldin Professor of Medicine at Boston University. Laertis Ikonomou, PhD, is an assistant professor of medicine at Boston University School of Medicine. Their ground-breaking stem cell research resulted in cells obtained from individuals with chILD being converted into pluripotent stem cells using state of the art reprogramming techniques. These patient-specific/disease-specific stem cells can now be differentiated into lung cells with plans to develop a model of specific child disorders to better understand the basic pathology and screen for treatments. These cells are now available to other researchers as a tool for testing possible therapies and the first step to finding cures for a variety of chILD disorders. Based on the success of this program, Dr. Kotton has secured substantial additional funding from both NIH and NHBLI.
Center for Regenerative Medicine of Boston University
Dr Laertis Ikonomou, PhD
Boston University School of Medicine
Dr. Nogee’s research at Johns Hopkins University is directed at determining if a mutation in the CCR2 gene causes certain interstitial lung diseases. Proving that a problem in this gene can cause lung problems will also be important information to researchers who are targeting this gene as a possible therapy for other diseases.Our portion of the grant funding was made possible through the fundraising efforts of the John Schwalm and the donors from the Crouch Girls First Giving Page. Their funds were designated for unknown familial lung disease and Dr. Nogee’s was selected from many applications by the ATS Foundation review board. We thank you for your efforts and look forward to the outcome of this promising research
Johns Hopkins University
Lisa R. Young, MD: Awarded a $50,000 for NEHI Research from the chILD Foundation, the ATS Foundation and the chILD Lung Foundation (UK).
Dr. Young is Associate Professor of Pediatrics and Medicine at Vanderbilt University School of Medicine: Her project, entitled “Genetic Discovery in Familial Neuroendocrine Cell Hyperplasia of Infancy,” explores how NEHI could be an inherited disorder. Evaluating the clinical manifestations of NEHI in families will enable the most efficient approach for determining the genetic cause(s) of NEHI. Identifying the genetic cause of NEHI will enable less invasive diagnosis of NEHI and provide knowledge which holds promise for developing future therapies.
Vanderbilt University
School of Medicine
Robin Deterding, MD: Awarded the $35,000 ATS Foundation/chILD Foundation/La Fundación Pequeños Pulmones Research Award for NEHI research.
Dr. Deterding is Professor of Pediatrics at the University of Colorado Denver. Her project is entitled “Novel Proteomic Profiles in Neuroendocrine Cell Hyperplasia of Infancy (NEHI).” Suspected NEHI patients undergo multiple expensive and risky diagnostic tests that include CT scans and lung biopsy. Dr. Deterding and her team will develop an alternative and less invasive diagnostic tool to improve the safety and efficacy of NEHI diagnosis. They will also help identify novel biomarkers for disease severity and prognosis, which will allow families to better understand the disease course and risks for their children.
Dr Robin Deterding, MD
Children’s Hospital Colorado
Team Bronchiolitis Obliterans Grants awarded by Second Annual Million Dollar Bike Ride held in May of 2015. $50,500 raised by the MBDR matched the amount raised by the chILD Foundation and chILD UK.
- Martin Rosewich, MD: Awarded a $50,500 grant for Bronchiolitis Obliterans research from the Second Annual Million Dollar Bike Ride. Dr. Rosewich, with Goethe-University Frankfurt, Germany, is conducting a pilot to examine the role of microRNAs in the pathophysiology of Bronchiolitis Obliterans.
- Stephen Stick, MB, BChir, PhD: Awarded a $50,500 grant for Bronchiolitis Obliterans research from the Second Annual Million Dollar Bike Ride. Dr. Stick, with Princess Margaret Hospital for Children, Perth, Western Australia, is studying Epithelial-mesenchymal transition in pediatric airway epithelial cells following infection with Bronchiolitis Obliterans associated adenoviruses.
chILD Foundation awarded Rare99X grant from Rare Genomics Institute
In 2012, the chILD Foundation submitted two grant applications to the Rare99X Project offered by the Rare Genomics Institute. One grant application was accepted for funding and several families that have multiple children affected by Neuroendocrine Hyperplasia of Infancy (NEHI) will have exome sequencing done to look for common genetic mutations among NEHI patients. The data obtained from this testing will be shared with our researchers and will be used to elevate our understanding of familial NEHI.
Rare Genomics Institute