Computer Q&A: Net timely vehicle for caring causes
Thursday, February 12, 2004By David Radin
Eleven-year-old Amy Katz is fighting Leukemia. The only known cure for her type of illness, called Chronic Myelogenous Leukemia (CML), is a bone marrow transplant. When Amy's illness was first diagnosed, her parents, Mike and Lisa Katz, quickly turned to local professionals and the Internet to learn about the disease and to find potential solutions.
Using AOL search as her starting point, Lisa searched for resources and articles about CML, which is how she found Dr. Brian Druker. Druker, working at the Oregon Health & Science University and in his own lab, created a drug called Gleevec as a potential cure for CML. Gleevec targets the abnormal cells and leaves healthy cells alone, thereby causing fewer side effects.
Across town, 16-year-old Cara Feldman has been suffering from Acute Myeloid Leukemia. Her case had been affecting her since April 2001 before her parents finally found a donor through a national database. In November, she finally underwent a modified bone marrow transplant that her father, Morry, calls a kinder, gentler procedure. The doctors decided the modified approach was needed because chemotherapy had weakened her heart beyond the point at which a standard transplant would be safe.
Both sets of parents have been depending on databases of potential bone marrow donors to find the best match for their daughters -- a national donor database of 5 million registrants, and a worldwide database of 8 million registrants. Cara found her donor after much waiting. Amy is still waiting.
A dedicated team of volunteers have set up a Web site at http://www.amysarmy.org/ to help find a matching donor for Amy and to raise awareness and financial support. They have also set up a local donor drive Feb. 29, in which potential donors can take a simple blood test for free to see if they match Amy's needs. The probability of any person being a match is quite small. So far, only three people have ever found their own matches through their own local donor drives. So Lisa Katz is trying to elevate awareness on a national level to get more people to become donor candidates. In her view, if more donor drives are done nationally for the collective good, matches will be found for the various patients who need bone marrow transplants -- even if a specific drive doesn't help the local patient. That increases the odds for Amy and for others.
Because the odds of finding a match increase when donors and patients are in the same ethnic group, Lisa is concentrating her efforts on increasing the number of Jewish donors -- but is happy to help others become donors too. She has recruited several Jewish organizations, including Hadassah, Chabad and the United Jewish Federation, to send e-mails to affiliated organizations that can help spread the word; and she's asked them to send e-mails to their members to recruit donors. She also is working with "Gift of Life" (http://www.giftoflife.org/) a nonprofit organization whose mission is to increase Eastern-European Jewish representation in the bone marrow donor pool.
Amysarmy.org has provided benefits beyond donor recruitment and financial solicitation. It has helped Amy's friends get behind her cause. They can purchase T-shirts and caps to show their support and spread the word some more. It has also attracted e-mail from people throughout the United States, some of whom are in similar situations, looking for accurate information and support. Lisa is happy to help people who visit the Web site and send her e-mail.
Sometimes we take technology for granted. Amy and Cara's parents couldn't afford to. Instead, they took advantage of it.
(David Radin is a consultant and nationally syndicated radio show host. Sign up for his tip letter and find an archive of his previous columns at http://www.megabyteminute.com/. Mail him your questions at firstname.lastname@example.org.)
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