San Francisco Bay Area, Calif.
For Claire, five years sick and half-bedbound, half-chairbound, it’s all about making a difference.
Bitten by a tick, she developed a Lyme-like rash and accompanying symptoms; a neck injury exacerbated her health problems. She became bedridden at age 29, stricken by debilitating fatigue, muscle pain and brain fog. She was forced to abandon the things she loved: her career as a software engineer in Silicon Valley, performing in a dance group, practicing tai chi, hiking.
“I had to stop working, move back home with my parents and sell my condo. I had to stop dancing with my performing group and practicing tai chi, two of my favorite activities. I was unable, for the most part, to talk, e-mail, or chat with friends, read books or magazines, or listen to music or watch videos during the first several years. Even now, it took me three weeks to write the answers to these questions,” says Claire. “I depend on my parents for the cooking and grocery shopping. I shower once or twice per week. In the last year, I was at least able to surf the web and have a few social visits at home.”
She has been a member of and supported the Association since the beginning of her illness. “Among CFS organizations, the CFIDS Association funds the highest quality scientific research and is the only one I am aware of that keeps out the pseudoscience. It is currently the only CFS organization I will donate to for scientific research,” she says, noting that she bases this decision on her own education in the biological sciences and research methods in several social sciences at a top research university. “In addition, over the last two years, I have had a growing appreciation for how the CFIDS Association has been steadily focused and getting results amidst controversy elsewhere.”
Claire appreciates the Association’s high-quality, high-impact research program. “The CFIDS Association funds researchers at top-tier universities and medical centers. It conducts the research grant application and review process professionally. It fosters collaboration between research groups. It seeks advisors among well-respected scientists with a voice in the larger medical and scientific community. I believe all of these are necessary to gain respect and move the science forward.”
And she appreciates the difference the Catalyst Fund will make for her and other CFS patients. “I do what I can to help myself and others. It is a selfish reason. I want to get better and as soon as possible,” Claire says. “Simple math: if a pilot research grant is approximately $100,000, then I figure that my contribution is actually a significant part. It could make the difference between a research project getting funded or not, which could make the difference between research progress being made several years earlier or later, which could make the difference between treatments being available several years earlier or later. I am still young and several years of my life improved earlier would make a big difference. Besides, I am too ill to even be able to spend my extra money on anything else!”
Two years ago, she was able to create a mostly passive income selling software online; Claire generously committed to donating at least half of this income to CFS research. Her goal is to one day fund an entire research grant.
“I hope other patients will be inspired and see that they can still contribute even at this level of disability,” she says. “Two years ago, I had no income and was mostly bedridden. You can create your own hope, real hope. Your donations will make a real difference.”
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