Gorham-Stout disease (GSD) is characterized by progressive bone destruction and proliferation of lymphatic vessels. In 2016, Andrea Del Fattore, PhD, and Andrea Bartuli, MD, and their team at Bambino Gesù Children’s Hospital, in Rome, Italy, were awarded funds raised for a research study through the LGDA’s and LMI’s participation in the Million Dollar Bike Ride (MDBR). The goal of the
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We want to thank Team LGDA & LMI and all of you who supported them in the 2019 Million Dollar Bike Ride. Including matching funds, the event raised more than $60,000.00 that will go to important research of GLA, GSD, KLA, and CCLA! UPDATE: On August 22, 2019 the Orphan Disease Center issued its RFA for this funding cycle. The
» Read moreAs the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking. We have developed a survey to gather your experiences as
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Representing the LGDA at the 10th Annual Health Care Transition Research Consortium Research Symposium and the 19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, in the Texas Medical Center were LGDA Director of Patient Programs, Lisa Klepper, and LGDA board member, Tiffany Ferry. The meetings were held October 24-26, 2018 and co-hosted by Baylor College
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For extraordinary accomplishments in discovery and advancement in the field of lymphatic science for the benefit of our worldwide patient community presented to Michael T. Dellinger, PhD Assistant Professor Division of Surgical Oncology Department of Surgery Hamon Center for Therapeutic Oncology Research UT Southwestern Medical Center Dallas, Texas The LGDA’s award for a scientist was made at the 2nd
» Read morePresented by Michael Dellinger, PhD, University of Texas Southwestern Medical Center In the past, there were limited resources available for research on generalized lymphatic anomaly (GLA), kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD). The Lymphatic Malformation Institute (LMI) was created in 2011 to address this need. The LMI fosters collaborations among scientists and promotes the dissemination of knowledge on GLA,
» Read morePresented by Michael Dellinger, PhD, University of Texas Southwestern Medical Center DNA carries all of the instructions for the development of an organism. DNA is a long polymer made up of the building blocks, G, A, T, and C. Genetic mutations are changes to the sequence of DNA. Some genetic mutations are germline mutations (heritable), whereas other mutations are somatic
» Read moreWhen Julian Cardenas, a 10-year-old in New York, was assigned to complete a capstone project at the end of his academic year he decided on Gorham-Stout disease as his topic. Julian was diagnosed with GSD when he was just 2 years old and wanted to raise awareness about the disease and money for research. Julian’s efforts resulted in over $400
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The Orphan Disease Center (ODC) at the University of Pennsylvania invites researchers to participate in the 2017 Million Dollar Bike Ride Pilot Grant Program. The program is now open and offering 33 different research grant opportunities focusing on 23 different rare diseases. This program provides a one‐year grant to support research related to a rare disease represented in the
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The LGDA and its research partner, Lymphatic Malformation Institute (LMI), joined together again on May 20, 2017, to take part in the Million Dollar Bike Ride to raise awareness and critical research dollars. This is the third year for Team LGDA to participate in the event. Thanks to its dedicated supporters, Team LGDA in 2017 will award more than $100,000
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