Category Archives: LGDA Mission

2018 LGDA Patient and Family Conference Report

Over the last weekend of July 2018, the LGDA hosted its second International Patient and Family Conference in Dallas, Texas. Since its founding in 2007, the LGDA has had as a primary goal to bring together patients and their families, clinicians, and researchers to share experiences and knowledge that will help to improve understanding of generalized lymphatic anomaly (GLA), formerly

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LGDA Awards 5th Founder’s Award

The Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is quite pleased to announce that Judith Margolin, MD, is the 2017-2018 recipient of its special biennial Founder’s Award. Dr. Margolin is a pediatric hematologist-oncologist in Houston, on staff at Texas Children’s Hospital.  She received her medical degree from University of Cincinnati College of Medicine   Dr. Margolin is Co-Director

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LGDA Represented at Rare Diseases Day 2018

On February 24, 2018, Texas Children’s Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center at TCH, Dr Ionela Iacobas, hosted the exhibit for vascular

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LGDA Hosts First Non-Event Fundraiser

  You read that correctly. Our Non-Event is guaranteed to please everyone everywhere because you’re doing whatever you want, which may or may not include absolutely nothing. We’re not holding an event. We’re not booking a hall, picking a menu, hiring entertainment, scheduling activities, twisting arms to get volunteers, hoping for good weather and crossing our fingers people find time

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#LGDAwarenessDay Event in the Netherlands

On May 26, 2017, the Van der Velden family hosted their first #LGDAwarenessDay at their home in Dordrecht, the Netherlands; fifteen-year-old Ella van der Velden has lymphangiomatosis. To raise awareness for this disease and Gorham-Stout disease (GSD), the family invited people by social media, email and the local newspaper to visit from 1-6pm. The family spoke with visitors at a

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Dr. Cameron Trenor Receives Founder’s Award

Cameron C. Trenor, III, MD, Assistant Professor of Pediatrics, Harvard Medical School, and Director of Clinical Research for the Vascular Anomalies Center at Boston Children’s Hospital, was presented with the 4th Founder’s Award during the 2nd International Conference on Generalized Lymphatic Anomaly (GLA) and Gorham-Stout Disease in Atlanta, Georgia, June 10, 2016. Created by LGDA Founder Jana Sheets, the award

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Million Dollar Bike Ride

Donate today to help LGDA raise $20,000 On Saturday, May 9, 2015, Team LGDA will participate in the 2nd Annual Million Dollar Bike Ride in Philadelphia, Pennsylvania, to raise more than $1 million for rare disease research. All funds raised for Team LGDA will be used for a lymphangiomatosis and Gorham’s disease research project chosen by the LGDA.  Once Team

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Rare Disease Day Event

  LGDA President Jack Kelly to speak at Rare Disease Day Event   The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media: Georgia Rare Disease Day State House Event Friday February 27, 2015 State Capitol

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Orphan Drug Heroes

World Orphan Drug Congress USA Heroes Wall           For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the 30 heroes of the sector.

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LGDA Intercedes to find help for Child in South America

In early April 2013 the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in Shushufindi, Ecuador.  Ladio spent two months in Amherst, Massachusetts, in

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