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Champions for the Cause
Almost 20 years ago, Tom and Sharon Wallsten were celebrating their son Peter’s graduation from the University of North Carolina. Peter had been the editor of the school’s newspaper and had a job as a reporter waiting for him at the St. Petersburg Times in Florida. He planned to start his career after traveling in Europe.
“It was terrible,” recalls Sharon. The retinal specialist was very blunt and insensitive about the fact that Peter would continue to lose more and more vision. He offered no support, compassion or answers to their many questions. “When we asked how much vision Peter would lose, he told us, ‘Well, he won’t be able to pilot an airplane.’” Despite the devastating news, Peter had a very positive attitude from the beginning. “We were very upset,” says Tom. “I’m sure Peter was, too, but he didn’t let it get in his way.” Peter was a little concerned about what the diagnosis would mean for his career. It was his dream to work as a newspaper reporter. Fortunately, when he informed the St. Petersburg Times of his condition, they were incredibly supportive. Still searching for more information, the Wallstens accompanied Peter to obtain another opinion and more information from a well-known retinal specialist in Florida. Unfortunately, the doctor made no attempt to connect with Peter or his parents and, other than confirming the diagnosis, gave them no useful information. Tom and Sharon took it upon themselves to start learning more and they came across an information and support group called Macular Degeneration International (MDI). This group was led by Tom Perski, who also suffered from Stargardt disease. Making that connection was helpful because they had someone to answer questions about the disease itself as well as about adaptive tools and technology. He provided a lot of helpful information in a positive manner It was through Perski that the Wallstens first learned of the Foundation Fighting Blindness. “We felt that it was important to start contributing in some way to a group that was fostering research in the area because so little was being done at the time for Stargardt,” says Sharon. It was also important to Sharon to find other people affected by Stargardt who still had a positive outlook for Peter to talk to. It really wasn’t until they attended VISIONS, the national conference of the Foundation Fighting Blindness, that they were able to find anyone else in addition to Perski. “The first conference we attended was very helpful,” says Sharon. “Peter was able to meet some good people to talk with. We also liked that the conferences offer the opportunity to speak directly to the researchers.” As they learned more about the Foundation, Tom and Sharon became generous supporters of the organization. “I was very interested in how the Foundation selected their research initiatives,” says Tom. “Unlike many private foundations, they actually have a rational way to assess the projects – through peer review. In my mind, that was really important.” As a result, the Wallstens continued to contribute to the Foundation’s work. They have supported the For the Love of Sight Dinner in Washington, D.C. for many years. “I think what keeps us supporting the Foundation is that they’re really driven to bring successful work to clinical trials, and knowing that the work has gone through rigorous stages of vetting,” says Sharon. “I think it’s very exciting.” Tom and Sharon appreciate the Foundation’s goal to truly and thoroughly understand the mechanisms of these retinal diseases as they work to find ways to treat them. Peter now works as a White House correspondent for The Washington Post, is happily married with one child and another on the way. Throughout his career in journalism, his employers have been more than willing to give him whatever he needs in order to be able to do his job. He uses large computer screens, text-to-speech software, and magnifiers. “Peter’s vision has definitely deteriorated over time,” says Sharon. “Even though he has been through so much, he maintains an upbeat attitude.” As Maryland residents themselves, Tom and Sharon are happy that Peter’s job has brought him and his family so close. They all plan to attend VISIONS 2011 and are excited to learn about the latest science information. “The research is so much further ahead now than when Peter was diagnosed,” says Tom. “There really is promise. The future looks very hopeful.” |
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