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Political action: Genetic testing appointment

      The letter from Secretary Shalala appointing me to the Secretary's Advisory Committee on Genetic Testing (SACGT) was dated April 12, 1999. The date would have been my sister's 50th birthday, except my sister had died of cystic fibrosis shortly before her sixth birthday. A brother, who had been born a year before me, had died at age 2 weeks, and it was only after my sister's diagnosis that we learned his meconium ileus also had been due to cystic fibrosis. Clearly, genetic illness has had a large impact on my family. My father was an early leader in the National Cystic Fibrosis Association: he founded chapters in 5 of the 6 New England States, was the first president of the Massachusetts chapter, and was a member of the original Board of Directors of the National Association.
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