Sue Taylor Brown ... September 16, 1939 - July 10, 2013
It is with great sadness we must say goodbye to a great friend and a pillar in the Fabry disease community. We mourn the loss of Sue Brown and we celebrate her life. May the many wonderful memories with Sue provide great comfort to Sue’s husband Bob and their family in this very difficult time.
When I think of Sue, the words I would use to describe her are probably the same words others would use. Kind, caring, helpful, supportive, cheerful, generous, strong, courageous, honest, and of course very stylish come to mind. But I’m not sure everyone would describe Sue using some of these words for all the same reasons. Sue’s relationships have covered a life-time of activities and adventures.
My relationship with Sue … and Bob … started in 2005 with an evening out for dinner with mutual friends. We were brought together for two reasons. The first reason was Sue and I have something very unusual in common. We both have the rare genetic disorder Fabry disease. Statistically, based on the prevalence of Fabry disease, a city the size of Columbia, Maryland would have two people with Fabry disease. That night Sue and I were Columbia’s two representatives. The second reason is Sue was recommended to me as a potential member of the National Fabry Disease Foundation’s Board of Directors as we formed our new organization. We had a nice dinner, good conversation, had some laughs, and Sue accepted our offer to join the board. It was a great start to a great friendship!
So here we are 8 years later looking back at Sue’s many contributions and accomplishments to the National Fabry Disease Foundation and to people in the Fabry disease community. Sue did a wonderful job to share her former association management experience, to contribute her ideas and input, to provide a “patient” and especially “a female patient” perspective, to provide support, and to contribute to making decisions that made our organization successful. We could not have accomplished all that we have without Sue.
But Sue’s contributions extended well beyond the boardroom. When you have a rare disease you are often put in the role as expert about your disease. You quickly learn more than anyone else about your disease. You teach your family, your friends, and your physicians about your disease. As you may expect of Sue, she went well beyond that role to share her knowledge and her experiences with Fabry disease with others who needed help and support. Sue contributed frequently to several patient and family discussion forums and helped to moderate the National Fabry Disease Foundation’s “Inspire” discussion page. Sue was always willing to share details of her symptoms and experiences, many very personal, for the benefit of others. Sue always offered support, encouragement, and kind words to others struggling with Fabry disease.
To put my words about Sue Brown into perspective, Fabry disease is a tough disease. It’s progressive, destructive, and life-threatening. It can affect the entire body. It severely impacts your quality of life. Like many of us, Sue probably never realized just how bad she often felt compared to other people because people with Fabry disease don’t usually know what normal feels like.
Sue courageously pushed past Fabry disease even as it began to affect her heart and kidneys … through an implanted pacemaker/defibrillator, through a kidney transplant, through the medications that suppressed her immune symptoms to help her body accept her new kidney, and then through the melanoma that suddenly took her life. Through all of this, Sue always thought of others, never herself.
When I would say to Sue, “How are you doing, Sue?” her response always downplayed her own health concerns even when I knew she wasn’t feeling well. Sue’s strength, courage, determination, positive attitude, and ability to smile even through the heavy burden of her disease are an inspiration and a testament to the wonderful, selfless person she always was. Just last month Sue drove to and attended our board meeting in Arlington, Virginia. She was upbeat, immersed in the business at hand, making valuable contributions, and adding to the positive spirit of the day. After the end of the meeting Sue told us about the melanoma. She was optimistic but realistic. She said we should make plans to have someone else sign financial documents if she wasn’t available. Sue was being classic Sue, the person we love dearly and will miss greatly. Sue was a wonderful person, a wonderful role model, a hero and a champion who has a place in our hearts forever!
Sue, good bye our friend. It was a great honor and a pleasure to know you! Thank you for everything! Jerry Walter