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Children's Interstitial Lung Disease - ChILD Foundation

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Dr. Anthony Shum Receives ATS Research Program/chILD Foundation

The ATS Research Program and the chILD Foundation have awarded Anthony Shum, MD, of the University of California, San Francisco $80,000. The award will support Dr. Shum’s research project, “Defining the pathogenesis of childhood ILD in COPA syndrome.”

 The ATS Research Program Partner Grants provide crucial support to talented investigators from around the world, launching careers dedicated to scientific discovery and better patient care.

Dr. Shum wrote in his application summary that his proposal will “provide critical support for me to advance studies of lung disease pathogenesis of COPA syndrome and produce preliminary data that will form the basis for larger extramural funding.”

“The Children’s Interstitial Lung Disease Foundation has been privileged to partner with the American Thoracic Society on funding these types of important research projects since 2010” said Wayne Danson, Foundation Board Chairman.  “We look forward to the results of Dr. Shum’s work and its contribution to our effort to ensure more breaths for the young victims of rare lung disorders.”

“Dr. Shum’s innovative project addresses important knowledge gaps in the molecular pathogenesis of COPA Syndrome, a disorder of immune dysregulation which presents in childhood with interstitial lung disease (ILD),” said Karen Ridge, PhD, chair of Scientific Grant Review Committee. “His ATS Research Program/chILD Foundation Partner Grant seeks to link the innate immune adapter molecule STING to disease.  The successful completion of his work will not only be important for understanding lung disease in COPA syndrome, but for other systemic inflammatory disorders that drive type I interferon signaling and interstitial lung disease.”  

Visit our website for more information and to see the complete list of 2020-2021 Research Program awardees.

The application process for the next cycle of grant opportunities will open July 20, 2021. For more, visit the website here. 

About the ATS
The American Thoracic Society and its Research Program are improving respiratory health worldwide by supporting young investigators in pulmonary, critical care, and sleep medicine. The ATS Research Program, established in 2004, bolsters new investigators as they strive to launch independent research careers dedicated to innovation in patient care.

Since 2004, the Research Program has awarded $21.9 million in research grants to 321 investigators who have gone on to secure more than $491 million in federal funding. That’s a return on investment of $22 per dollar awarded.

About the Children’s Interstitial Lung Disease Foundation The Children’s Interstitial Lung Disease Foundation (chILD) 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 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. Please visit us at www.child-foundation.org.

Wayne I. Danson assumes role of Chairman of the Foundation’s Board of Directors

The chILD Foundation today announced that effective September 1, 2020, Wayne I. Danson has assumed the role as Chairman of the Foundation’s Board of Directors. He has been an active member of the Board since 2016. In his new role, Wayne will leverage his deep experience in corporate and financial management to further advance the Foundation’s mission of raising awareness of all forms of children’s interstitial and diffuse lung diseases, and raising funds for the development of cures.

A key part of his leadership will be the expansion of the Foundation’s national presence, enhancing our medical and institutional relationships and establishing new cooperative partnerships with healthcare organizations, medical specialists, corporate and charitable organizations, and research centers in the battle against these rare childhood lung disorders.

You can view Wayne’s bio here.

Phase III InPedILD™ trial enrolls first patient to evaluate nintedanib in pediatric population with fibrosing interstitial lung disease

Boehringer Ingelheim today announced that the first patient has enrolled in InPedILD™, a global Phase III trial assessing the dosing and safety profile of nintedanib in children and adolescents between 6 and 17 years old with clinically significant fibrosing interstitial lung disease (ILD).

Childhood ILD (chILD) includes more than 200 rare respiratory disorders that can affect infants, children and adolescents, making it difficult for them to breathe. In some cases, fibrosis can develop that involves scarring and damage to the lungs. This can lead to a significant impact on the daily life of those affected, as well as their families, including high morbidity and mortality. There are currently no approved therapies available for the treatment of chILD. 

“Some children with interstitial lung disease may develop serious fibrosis that progresses,” said the coordinating investigator Prof. Robin Deterding, M.D., Director of the Breathing Institute, Children’s Hospital Colorado. “Though the underlying causes of pulmonary fibrosis may be different in children, we’re excited to determine if treating the mechanism of fibrosis improves children’s lung fibrosis, as it does in adults.”

Nintedanib, which is marketed as Ofev®, is currently approved in more than 80 countries for the treatment of people living with idiopathic pulmonary fibrosis (IPF). It is also approved in more than 40 countries as the first and only therapy to slow the rate of decline in pulmonary function in patients with systemic sclerosis-associated ILD (SSc-ILD). Ofev® recently also obtained approval in the USA, Canada, Japan, Brazil, Argentina and the EU, for a third indication, as the first and only treatment for patients living with chronic fibrosing ILDs with a progressive phenotype.

“The initiation of this clinical trial further advances critical research aimed to address significant unmet needs in one of the most vulnerable pediatric patient communities impacted by ILDs,” said Gregory Porta, founder and member of the board of directors, chILD Foundation (www.child-foundation.org).

“Boehringer Ingelheim is proud to start this trial to provide valuable insights as we evaluate this potential treatment for children and adolescents with these rare and heterogenous conditions for which there are currently no treatments with proven efficacy and no randomized controlled trials,” said Susanne Stowasser, M.D., associate head of pulmonology medicine at Boehringer Ingelheim. “This study represents our ongoing commitment to address unmet needs and advance research for adult and pediatric patients living with pulmonary fibrosis.”

About InPedILD™
This double-blind, randomized, placebo-controlled, multicenter international Phase III trial [NCT04093024] will enroll patients in approximately 70 sites in 24 countries. The study, in children and adolescents (6 to 17 years old) with clinically significant fibrosing ILD, will evaluate the dose-exposure and safety of nintedanib, administered orally on top of usual care for 24 weeks, followed by open-label treatment with nintedanib of variable duration. The primary endpoints are blood concentration of nintedanib at week two and week 26, and the number of patients with treatment-emergent adverse events (TEAE) at week 24. Secondary endpoints, among others, include change in forced vital capacity (FVC) percent predicted from baseline at week 24 and week 52, which is an established measurement of lung function; absolute change from baseline in health-related quality of life, as measured by the Pediatric Quality of Life Questionnaire™ (PedsQL™) at week 24 and week 52; time to first respiratory-related hospitalization over the whole trial; and time to first acute ILD exacerbation or death over the whole trial. For more information about the trial, please visit the website.

Read more at: https://www.boehringer-ingelheim.us/press-release/phase-iii-inpedild-trial-enrolls-first-patient-evaluate-nintedanib-pediatric

Join the chILD Foundation and the Boston Children’s Hospital for a Lung Family Reunion

The Lung Family Reunion is both fun and educational weekend for children, siblings, and families affected by Children’s Interstitial Lung Disease (chILD). chILD specialists and clinicians will be leading informative presentations and engaging discussions. Families will have an opportunity to learn about these complex diseases, while socializing in a fun and with others on similar journeys.

chILD Foundation Nominates Joe McMonigle as Chairperson

The chILD Foundation is excited to announce that Joe McMonigle as the new Chairperson of the Board. Joe has served in several capacities on the board, including member, treasurer, and vice-chair, over the course of several years. Joe brings a strong, family centered vision to the board. Stay tuned for more updates!

November 28th is Giving Tuesday!

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Podcast: Keep It Real: Thriving with Children’s Interstitial Lung Disease – A conversation with Renee Farrell

All There Is hosted by Kelly Bargabos

This episode features mom, Renee Farrell, discussing life with her children that are diagnosed with chILD. We hope you enjoy listening

Listen Now

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