Awareness News


 

Star Wars Dark Side Marathon

The LGDA is proud to have Caitlin Havener join us in fighting against GLA and GSD. She will be running a half marathon during the Star Wars Dark Side Marathon at Disney World this April while raising money for the LGDA. In 2016, Caitlin recognized that she was not living ...
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#LGDAwareness Day 2017

In May 2017, the LGDA and its counterparts in the UK and Europe conducted a weeklong campaign dedicated to raising awareness about GLA/lymphangiomatosis, Gorham-Stout disease, and KLA, which concluded with the very first #LGDAwareness Day on May 26, 2017. The theme for the week was “5 Words on Being Rare.” ...
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Supporting the Mission

All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA's mission. Generalized lymphatic anomaly (GLA, also known as lymphangiomatosis), kaposiform lymphangiomatosis, Gorham-Stout disease (GSD), central conducting lymphatic anomaly (CCLA), and the other rare lymphatic anomalies are ...
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Capstone Project Yields Over $800 for Research

When 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 ...
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Kiltwalk in Scotland raises £4,000

LGDA partner Alfie's Trust in the United Kingdom shared with us one of their efforts to raise funds to support the international mission of the LGDA by participating in the Kiltwalk. The Kiltwalk is a unique charity that enables individual walkers and groups to raise money for a Scottish charity ...
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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 ...
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