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.” We asked patients, their families, and volunteers to select 5
» Read moreTen-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 raised $250, which he sent to the LGDA with a
» 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
» Read moreLGDA 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 of their choice. Their aim is to become Scotland’s best
» Read moreThe family of a Canton, Ohio, area boy with GLA/lymphangiomatosis celebrated his 3rd birthday by hosting a fundraiser to benefit the LGDA. About 150 people attended the event on July 29, 2017, hosted by Linda Sutherland, the boy’s aunt, who provided the following description of the event: We started out by creating an invitation to our Birthday Bash/Fundraiser to honor
» Read moreThe 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
» Read moreThe image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text. Family from Dordrecht asks for awareness of rare disease Fifteen-year-old
» Read moreWorld LGDA Awareness Day The LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, are pleased to announce the establishment of an official Worldwide Awareness Day of May 26. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. The theme for this first day is 5
» Read moreAlfie Milne Lymphangiomatosis Trust founder Tracy Milne, was asked to speak about her experience in parenting a child with a rare disease at an event in Aberdeen, Scotland, on Rare Disease Day 2017. She has very graciously given permission for us to share the remarks she made at that event: When your child is given the diagnosis of lymphangiomatosis,
» Read moreAdvocates Visit Michigan State House to Lobby for Rare Disease LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan. This Council will give rare disease patients a voice in state government and provide educational
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