"Lethal Legacy" - 21-23 June 2009

Great Falls Tribune

 

Amie Thompson of Montana’s Great Falls Tribune told how a family in Turner, Montana, is coping with a deadly genetic disease so rare that only a handful of families worldwide are known to be affected by it. The disease, pallidopontonigral degeneration, or PPND, strikes in mid-life with symptoms similar to Parkinson’s disease and Alzheimer’s disease.Thompson told the story of how a dedicated researcher uncovered the rare disease, but she said, “what made the story come to life for me was listening to how the disease has affected each family member.” Several young family members now know that they are destined to come down with the disease.

“Though the story focused on a human drama, it gave readers a needed look at the tragedy of genetic diseases and how they might be avoided,” said Guy Gugliotta, a freelance science writer. Through the family’s story, “Readers learn how difficult it is to research genetic disorders, and how essential it is to have the cooperation on families like these,” said Nancy Shute, a freelancer formerly with U.S. News & World Report.

 “The family clings to hope that researchers will find a cure before the next generation is attacked,” Thompson said.

Robert Lee Hotz of The Wall Street Journal, one of the judges for print entries, said Thompson “admirably blends human interest and science in a heart-breaking saga of life, death and DNA.”