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

Investigator: Denise Adams, MD
Institution: Boston Children’s Hospital (Boston, MA)
Title of Project: The Lymphatic Registry

 

MILLION DOLLAR BIKE RIDE PROJECTS

 

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

 

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

 

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

 

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

 

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

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

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