This story first appeared in the Spring 2004 issue of Alpha-1-To-One Magazine.
When Alexandra “Sandy” Lindsey, Susan Stanley, and John Walsh met one another in the early 1990s, they quickly became fast friends, despite their disparate personalities. Stanley was a diminutive dynamo, energetic and gregarious. Lindsey was an elegant woman with a strong social conscience, a knack for organization, and an often wicked wit. Walsh was—and still is—a hard-charging entrepreneur, a man with the daring to launch new ventures and the salesmanship and smarts to make them succeed. Beyond their differences, though, the three shared an overwhelming optimism. They believed that working together, Alphas could help one another beat their disease. Their optimism led them to create AlphaNet and the Alpha-1 Foundation in 1995.
“Whenever I think of Sandy, Susan, and John together, I always think of those verses from Corinthians, about how God gives everyone different gifts and skills for a purpose,” says Katherine Armentrout, Lindsey’s sister.
“The three of them had such completely different gifts, but they complemented each other wonderfully.” A writer and public relations professional first diagnosed in 1984, Stanley felt frustrated by the lack of information available about her disease. She wanted to fill the void and researched Alpha-1 extensively herself. By the 1990s, she was already hard at work on an interactive CD-ROM to educate patients and health care professionals in an accessible, easy-to-understand format. Stanley envisioned the Internet as the means by which Alphas could form virtual communities, exchange reliable information, and support one another.
“Mom was a great teacher,” remembers Jessica Rickard, Stanley’s daughter. “She would give people a drinking straw, put it between their lips, and say, ‘Breathe.’ Then she would put her finger on the end of the straw and close off the opening. ‘Now try to breathe,’ she would say. ‘See? That is my day. That is my reality.’ She knew how to get her point across.”
For her part, Lindsey brought superb organizational skills and an inside knowledge of nonprofit organizations, having managed program development for the United Way, the American Heart Association, and Florida Foster Care. She understood the importance of public accountability and knew how to build an organization to ensure it. “Sandy became the chief counsel on those matters,” says Diane Walsh. “She was an inspiration— always gracious, always very compassionate, always interested in other people.”
“Sandy had a strong sense ethically of what to do,” agrees her husband, Lew. “Her experience with the United Way gave her a good idea how to set up the bylaws of the Foundation and the board of directors—to have half the board made up of Alphas, for example. Everyone had a lot of confidence in her.”
Both Lindsey and Stanley struggled valiantly to realize their vision, even as their health deteriorated. “Sandy actually came to work when she was very, very sick,” says John Walsh. “I will never forget her carrying her oxygen tanks around. She would drag her tank into the office and take a half-hour to catch her breath before she could talk to anyone. She was incredible.”
Stanley often worked from her bed and joined meetings by conference call when she couldn’t attend in person. “She was so tired by the time things were really starting to take off with the Foundation,” recalls Rickard. “Other people would say to her, ‘Susan, this organization is draining your energy. Why don’t you get on with your life?’ And she would tell them, ‘No, you don’t understand. This is my life.’”
Susan Stanley died in 2000; Sandy Lindsey, two years later. Neither expected to reap the rewards of the work they had begun. Rather, they fully intended to empower other Alphas—and those still undiagnosed—to follow the trail they had blazed.
“It’s one of life’s paradoxes,” says Armentrout. “The illness that ultimately killed Sandy was also the most powerful, most creative, and most life-affirming thing that ever happened to her.”
It lives on as her and Stanley’s legacy for Alphas.