It’s time again for the Million Dollar Bike Ride! Now in its sixth year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases. In addition, the requests for proposals for research have identified other worthy projects that LGDA & LMI have funded through other channels. Every dollar donated to reach our goal
» Read moreAs the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking. We have developed a survey to gather your experiences as
» Read morePresented by Judith F. Margolin, MD, Texas Children’s Hospital, Houston, TX Patients and their families face a veritable alphabet soup of acronyms starting with diagnoses (GLA/GSD/KLA), including diverse tests for diagnoses and monitoring (e.g., PT, PTT, Factors I-XII, d-dimers, DIC, LIC), and culminating with a host of procedures and drugs (generic and brand names)! Many of these terms, drugs, and
» Read moreCruising for Ella One of the fundraising events taking place for #LGDAwareness Day is Cruising for Ella on May 25th. This is a spectaculair experience from the water while watching old steam ships come by. Dinner and drinks included! Register: varenvoorella@gmail.com. Live for Ella Three bands from the Netherlands will give a benefit concert on the 31st of May at
» 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 moreOn 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
» 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
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