Word: marguses
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...Margus' nightmare started when he and his wife Vicki still had three boys in diapers, and his second eldest, Jarrett, then 18 months, developed difficulty walking and his speech slurred. At first doctors thought the cause was mild cerebral palsy. Then around his 18-month mark, Margus' next eldest boy, Quinn, started developing the same symptoms as Jarrett's, which suggested that the problem was genetic. The boys endured blood tests, spinal taps, muscle biopsies. After spending $60,000 and turning up nothing, the Marguses took their sons to see Dr. Jean Aicardi, a world-famous French neurologist who happened...
Like progeria, A-T is what might be called a superorphaned disease. It affects so few kids--just 400 in the U.S.--that scientists and drug companies don't bother with it. So Margus began applying his business brain to the problem of how to find a cure. He broke it down into smaller problems, assembling a list of things he needed to learn about: molecular biology, how the government funds research, how you capture the interest of top-notch scientists, what lobbying is all about. He decided his approach would be to pollinate as many excellent labs as possible...
...Still, Margus sounds distinctly sad. Sure, he has raised a lot of money and even made a savvy career switch that puts him in regular contact with executives from five of the top 10 pharmaceutical companies. Yet, in his mind, "so far we haven't done squat." His kids, now 13 and 15, are deteriorating daily. This summer he hopes to move his family from Florida to California, where he spends most of his time, but first he will need to retrofit a house "for two teenagers in power wheelchairs who can't control their motor skills very well...
...struggles of parents like Brad Margus and Leslie Gordon are less lonely than they were in the pre-Internet era. Numerous websites help such parents reach out and learn from one another; among them are sites created by the Genetic and Rare Diseases Information Center at the National Institutes of Health and the Genetic Alliance, an advocacy group. This June in San Antonio, Jannine Cody is convening the first World Congress on Chromosome Abnormalities. More than 1,000 parents, doctors and researchers are expected to attend. Sessions will range from "Neurological and Anatomical Imaging" to "Potty/Sleep Solutions." The event...
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