These are select articles originally published in the NBIA Disorders Association newsletter, written by Patricia Wood, president and founder of the organization. She shares her experiences in living with NBIA over the years, in the hopes that it will help other families in dealing with the often difficult and devastating impact NBIA has on their lives. It also chronicles the growth of our organization since its inception in 1996.
The articles are in chronological order from 2003 - 2014. Update: In June 2014 her daughter, Kimbi, turned 28 years old. In 2010, Kimbi got an intrathecal baclofen pump and since then, has been stable with very few bouts of hard dystonia.