The Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is quite pleased to announce that Judith Margolin, MD, is the 2017-2018 recipient of its special biennial Founder’s Award. Dr. Margolin is a pediatric hematologist-oncologist in Houston, on staff at Texas Children’s Hospital. She received her medical degree from University of Cincinnati College of Medicine Dr. Margolin is Co-Director
» Read moreThe 2018 Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference will be held on July 27 & 28, 2018, at the Hilton DFW Lakes Executive Conference Center in Dallas suburb of Grapevine, Texas. Planning is well underway for this exciting conference that you won’t want to miss! Those attending the conference will learn more about generalized lymphatic anomaly /
» 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 moreFinding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps. Knowing that you can talk to someone that understands – helps. Being able to share your experiences so others can learn from it – helps. So why is it still the case that after being diagnosed with a rare disease you are
» Read moreThe LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. This year we have invited medical professionals to share with the patient
» Read moreOn February 24, 2018, Texas Children’s Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center at TCH, Dr Ionela Iacobas, hosted the exhibit for vascular
» Read moreThe 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 life to her full potential. She focused her energy
» Read moreThe 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 special fundraising event. Penn will match our donations dollar-for-dollar –
» Read moreFundraising on behalf of the LGDA doesn’t require you to participate in a race or ride, host a dinner auction, put together a golf tournament – it can as simple as passing out a flyer or spreading the word on social media! There are many restaurants who offer a “dine to donate” night. You and the restaurant choose a date
» Read moreYou 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 good weather and crossing our fingers people find time
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