LGDA 5th Anniversary
Jana had a dream in two parts: one, to build an organization of people who would support one another in their journeys with lymphangiomatosis and Gorham’s disease; and, two, to promote awareness about these diseases, help patients find the best treatment, and find physicians and researchers who would take on the challenge of finding a cure. She devoted the last years of her life to finding and befriending people around the world affected by these diseases and getting this organization on its feet so that never again would anyone have to face the challenges of these rare diseases believing they were alone in the world. In many ways Jana was a force to be reckoned with; she knew her time was short and there was much to be done.
A handful of patients and parents of patients joined Jana and the LGDA was formed, with those individuals making up the original Board of Directors. Two of those original members, Jack Kelly and Scot Wiesner, continue to help shape the direction of the LGDA as members of the Board of Directors, with Mr. Wiesner its current Chairman. We are grateful, as well, to founding board members Sandy Goldfarb and Kathleen Olson for their efforts in the early days on the board and their continued efforts on behalf of this community. We note also, with special remembrance, the late Sonia Herbert-Brande, RN, also a founding member of the Board of Directors.
There is much to be grateful for in the work begun 5 years ago, not least of which is the generosity of the individuals who make up this unique community. Your willingness to support one another and your efforts to promote the missions of this organization are invaluable. Had this worldwide network of “Warriors” been the only thing to come from Jana’s work, she would have been proud. But Jana’s dreams have been carried forth by this organization and we now stand on the cusp of a new era of focused research into the causes of lymphangiomatosis and Gorham’s disease–research that will bring better diagnosis, treatment, and ultimately a cure.