Tracy’s youngest son was diagnosed with lymphangiomatosis in 2004 where her journey began to find a way to help her son. This lead to her discovery of the LGDA and the start of an affiliation to help and support their work. In 2012, she set up the Alfie Milne Lymphangiomatosis Trust, a registered charity in the United Kingdom (now the LGDA-UK), to help raise awareness of the disease and to raise much needed funds for research and patient support. Alfie’s Trust has provided financial support to help with the cost of organizing the LGDA’s First International Conference in Science and Medicine on Generalized Lymphatic Anomaly (lymphangiomatosis) & Gorham-Stout Syndrome in June 2013, the 2016 conference on GLA & GSD, Patient Conferences in Dallas in 2014 and 2018, and the Million Dollar Bike Ride, which has supported a dozen research projects since 2015.
Prior to accepting the role of LGDA Programs Assistant in May 2020, Tracy served as a member of the LGDA Board of Directors for 3 years, and as Chair of the board of the Lymphangiomatosis and Gorham’s Disease Alliance – Europe; she continues to serve LGDA-E as Patient Support Leader for the European Community. Before her family came along Tracy worked in Administration. She and her husband Mark live in Aberdeen, Scotland, and are parents to teenagers Lewis and Alfie.
Read Tracy’s story about Alfie’s journey here.