Author Archives: Admin

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 truly orphan diseases. Unlike some more common diseases of the

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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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Birthday Party Raises Over $3300 for LGDA

The 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

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2 Grants Available for GLA/GSD Research

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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Family Hosts World #LGDAwareness Event

The 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

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