Harriet McBryde Johnson, whose law practice specializes in disability advocacy, is probably best known for the 13 years she protested the Jerry Lewis Telethon. (She resents how Jerry portrays a child’s MD diagnosis as a “death sentence.”)
In her book Too Late to Die Young, Johnson details what life is like for someone who must depend on a personal assistant to help her attend to many of her daily needs and chores. Johnson explains how she faces her challenges from the seat of her motorized wheelchair by tackling none other than the animal rights advocate and euthanasia champion who believes that “children like her” should be killed at birth to allow the parents to have children who will lead a “happier life.”
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On August 8, 2005, 12 members of Congress signed a letter to the National Institutes of Health (NIH) addressing concerns about Chronic Fatigue Syndrome. Among the recommendations is for the establishment of five Centers for Excellence across the United States, each funded at $1.5 million per year for five years for the purpose of the diagnosis, clinical research and management, and treatment of persons with CFS. You can read the letter in PDF format on the CFIDS.org Web site.
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