Foundation News

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Up-to-date information on the activities of the Lymphangiomatosis & Gorham’s Disease Alliance, as well as news and events of interest to patients and professionals.

 

 


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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Join the Million Dollar Bike Ride!

The LGDA is proud to participate in Penn Medicine Orphan Disease Center’s 2018 Million Dollar Bike Ride, to be held on May 20, 2018 in Philadelphia. This year, the LGDA is joining forces with the Lymphatic Malformation Institute (Team LGDA/LMI) with a goal to raise $50,000.  This is a very ...
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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 ...
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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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Florida 10-year-old Raises $250 for Research

Ten-year-old Hunter Joiner of Florida was diagnosed in 2016 with lymphangiomatosis, also known as generalized lymphatic anomaly (GLA), and he wanted to do something to help everyone with the rare disease. So, he decided to sell t-shirts to raise money for the LGDA. When the fundraiser was over, Hunter had ...
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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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News and Events by Year
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf

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1st Edition – Winter 2009