Institution: Washington University (St. Louis, MO)
Title of Project: Developing an electronic health record tool to improve patient knowledge and self-management for complex lymphatic anomalies
Institution: Columbia University Medical Center (New York, NY)
Title of Project: Assessment of lymosomal dysfunction in lymphatic anomaly pathogenesis
Investigator: Carrie Shawber, PhD
Institution: Columbia University (New York, NY)
Title of Project: Assessment of proteasome inhibitors for the treatment of complex lymphatic anomalies
Year: 2022
Investigator: Dong Li, PhD
Institution: Children’s Hospital of Philadelphia (Philadelphia, PA)
Title of Project: Identification and Characterization of Variants Underlying Complex Lymphatic Anomalies
Investigator: Tim Le Cras, PhD
Institution: Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Title of Project: Biomarkers and Pathogenesis of Lymphatic Anomalies
Investigator: Victor Martinez-Glez, PhD
Institution: Institute of Medical and Molecular Genetics (Madrid, Spain)
Title of Project: Genetic and Genomic Analysis in Patients Affected by Gorham-Stout Disease and General Lymphatic Anomaly
Investigator: Fayez Safadi, PhD
Institution: Northeast Ohio Medical University (Akron, OH)
Title of Project: The Role of Lymphatic Fluid on Bone Cellular Interaction and Function
Investigator: René Haegerling, MD PhD
Institution: Charité – Universitaetsmedizin Berlin (Berlin, Germany)
Title of Project: 3-Dimensional Visualization of the Lymphatic Vasculature in GSD, GLA, and KLA using VIPAR
Investigator: Shoshana Greenberger, MD Phd
Institution: Sheba Medical Center (Ramat Gan, Israel)
Title of Project: Vertebrate based model for targeting overactivation of nras pathway in GLA
Investigator: Mike Dellinger, PhD
Institution: UT Southwestern Medical Center (Dallas, TX)
Title of Project: Development and characterization of an animal model of Gorham-Stout disease
Investigator: Erik Eklund, MD Phd
Institution: Lund University (Lund, Sweden)
Title of Project: Immunohistochemical features of lymphangiomatosis and Gorham’s disease
Investigator: Ionela Iacobas, MD
Institution: Baylor College of Medicine (Houston, TX)
Title of Project: Lymph-loss Markers as Predictors of Severity in Generalized Lymphatic Anomaly and Gorham-Stout Disease
Investigator: Donald McDonald, MD PhD
Institution: University of California, San Francisco (San Fransisco, CA)
Title of Project: Transgenic mouse model to determine the mechanism and treatment of congenital pulmonary lymphangiectasia and lymphangiomatosis
Investigator: Ramani Ramchandran, PhD
Institution: Medical College of Wisconsin (Milwaukee, WI)
Title of Project: Molecular crosstalk and matrix metalloproteinases in generalized lymphatic anomaly (GLA) and gorham-stout syndrome (GSS) patients
Investigator: Eva Sevick, Phd
Institution: UT Health Science Center at Houston (Houston, TX)
Title of Project: Imaging lymphatic function in normal subjects and persons with lymphatic disorders
Investigator: Cameron Trenor, MD
Institution: Boston Children’s Hospital (Boston, MA)
Title of Project: Lymphatic anomalies database
Investigator: Lianping Xing, B.Med., PhD
Institution: University of Rochester (Rochester, NY)
Title of Project: Bone cells and lymphatic endothelium interface
Investigator: Miikka Vikkula, MD PhD
Institution: Universite Catholique de Louvain (Brussels, Belgium)
Title of Project:Molecular Pathogenesis of Lymphatic Anomalies
Institution: Boston Children’s Hospital (Boston, MA)
Title of Project: The Lymphatic Registry
MILLION DOLLAR BIKE RIDE PROJECTS
2023
Investigator: Brian Sisk, MD
Institution: Washington University (St. Louis, MO)
Award: $60,679
Title of Project: CLA Chatbot: Developing a Scalable Artificial Intelligence-Powered Communication Tool for Families Affected by Complex Lymphatic Anomalies
2022
Investigator: Karina Yaniv
Institution: Sheba Medical Center (Tel Aviv, Israel)
Award: $68,650
Title of Project: A novel Zebrafish model of Kaposiform Lymphangiomatosis: A tool for drug discovery
Investigator: Michela Rossi, PhD
Institution: Bone Physiopathology Research Unite, Bambino Gesu Children’s Hospital (Rome, Italy)
Mentor: Andre Del Fattore
Young Investigator Award: $25,000
Title of Project: Analysis of a new therapeutic approach to inhibit osteolysis in Gorham-Stout Disease
Investigator: Silvia Martin Almedina, Senior Postdoctoral Fellow
Institution: St. George’s University of London (London, England)
Mentor: Pia Ostergaard
Young Investigator Award: $25,000
Title of Project: Molecular mechanisms of EPHB4 pathogenesis – towards new treatment development for lymphatic anomalies
2021
Investigator: Brian Sisk, MD
Institution: Washington University School of Medicine (Saint Louis, MO)
Award: $53,460
Title of Project: Identifying Unmet Care and Communication Needs of Families Affected by Complex Lymphatic Anomalies
2020
Investigator: Andrea Del Fattore, PhD
Institution: Bambino Gesù Children’s Hospital, IRCCS (Rome, Italy)
Award: $81,965
Title of Project: Understanding the effects of Sirolimus/Zolendronic acid treatment bone remodeling activity in patients with Gorham-Stout disease
2019
Investigator: Julie Blatt, MD
Institution: University of North Carolina, Chapel Hill (Chapel Hill, North Carolina)
Award: $62,861
Title of Project: Engineered microvessels derived from lymphatic endothelium as an in vitro model for drug repurposing for lymphatic malformations
2018
Investigator: Shoshana Greenberger, MD PhD
Institution: Sheba Medical and Tel-Aviv University, Israel (Ramat Gan, Israel)
Award: $50,535
Title of Project: Role of NRAS mutations in the pathology of generalized lymphatic anomaly
Investigator: Andrea Del Fattore, PhD
Institution: Bambino Gesù Children’s Hospital, IRCCS (Rome, Italy)
Award: $50,535
Title of Project: Analysis of crosstalk between regulatory T and bone cells in Gorham-Stout
2017
Investigator: J. Brandon Dixon, PhD
Institution: Georgia Tech (Atlanta, GA)
Award: $80,000
Title of Project: Tissue Engineered Lymphatic Malformation on a Chip for Screening Therapeutics
Investigator: Denise Adams, MD
Institution: Boston Children’s Hospital (Boston, MA)
Award: $52,109
Title of Project: Retrospective analysis of the safety and efficacy of lymphatic anomalies of the bone (Generalized Lymphatic anomaly (GLA), Gorham Stout Disease (GSD), Channel type Lymphatic Malformation (CTLM)) treated with mTOR inhibition and bisphosphonates
2016
Investigator: Andrea Del Fattore, PhD and Andrea Bartuli, MD
Institution: Bambino Gesù Children’s Hospital (Rome, Italy)
Award: $59,000
Title of Project: Understanding the molecular and cellular defects of bone remodeling in patients affected by Gorham-Stout disease (GSD)
Investigator: Carrie Shawber, PhD
Institution: Columbia University Medical Center (New York, New York)
Award: $101,000
Title of Project: Identification of the Genetic Causes of Generalized Lymphatic Anomalies
2015
Investigators: Maxim Itkin, MD and Yaov Dori, MD
Institution: University of Pennsylvania (Philadelphia, PA)
Award: $101,000
Title of Project: Dynamic Contrast Enhanced MR Lymphangiogram Imaging of Lymphatic Anomalies
Investigator: David Cormode, PhD
Institution: University of Pennsylvania (Philadelphia, PA)
Award: $51,000
Title of Project: Nano-magnetic Oils for the Study of Intestinal Lymphatics in Lymphangiomatosis
Investigator: Joseph Rutkowski, PhD
Institution: Texas A&M Health Science Center School of Medicine (College Station, TX)
Award: $51,000
Title of Project: Inducible Lymphatic Hyperplasia to Drive Chylous Accumulation Mimicking Lymphangiomatosis