It is the great pleasure of the ACDA to announce Baylor College of Medicine in Houston, Texas, USA was awarded a NIH R01 grant in the amount of $1,952,000 for ACDMPV research over the course of four years. This multi-year study at Baylor hopes to explain how enhancers in chromosome 16q24.1, including long noncoding RNAs (lncRNAs), regulate expression of the FOXF1 gene responsible for ACDMPV. Baylor will study the role of lncRNAs in genomic imprinting of the FOXF1 locus and will also study the function of a specific lncRNA in the development of lungs and other organs. LncRNAs are considered promising therapeutic targets and Baylor believes that by manipulating their expression, we may have the potential to correct the lethal phenotype of ACDMPV in the future.

The ACDA extends our heartfelt thanks to Dr. Pawel Stankiewicz (Project Leader for the 2017 NIH grant) and Dr. Przemyslaw Szafranski at Baylor College of Medicine for their tireless efforts to secure substantial NIH funding. As background, R01 grants from the NIH are highly competitive and are known as the gold standard due to it being one of the most respected mechanisms of financial support in the medical research world.

Please join us in publicizing this tremendous and significant news by sharing this announcement. We look forward to providing updates on the results of the research through this NIH grant as we continue our steadfast mission to find the cause of and cure for ACDMPV.

None of this would be possible without the ongoing seed grants raised by families and friends affected by ACDMPV. Among other objectives, prior seed grants have helped Baylor to accumulate and maintain the largest collection of DNA and tissue samples related to ACDMPV in the world and to detect mutations and deletions therein. The smaller seed grants (approx $50,000) issued each of the past few years through money raised by ACD families and friends have helped collect data for use in this larger multi-year government grant, which was the exact purpose of those seed grants. We will continue to focus on annual seed grants to investigate ACDMPV from all perspectives, including genetic, biological, clinical, pathology, etc. Our thanks, always, to the numerous individuals and organizations who continue to support our very important mission from the ground up.