General Info

NSDA: About NSDA In 1989, members of a local Spasmodic Dysphonia Support Group in Michigan pioneered a national organization for people living with spasmodic dysphonia. The National Spasmodic Dysphonia Association was established by Founding President ( 1989-1994 ) Larry Kolasa, Daniel Troung M.D., and Founding Treasurer and Past President ( 1994-1996 ) Rick Johnston. For years the organization was strictly volunteer-based and originally focused its efforts on patient education and support. The mission of the organization is to advance medical research into the causes of and treatments for spasmodic dysphonia, promoting physician and public awareness of the disorder, and sponsoring support groups for patients and their families. NSDA has funded several significant research projects and will continue that effort until a cure is found. The NSDA continues to reach more patients and physicians through the award-winning diagnostic video, "What is Spasmodic Dysphonia?" starring honorary Board Member Chip Hanauer. Chip, a Motorsports Hall of Fame speedboat racer, has elevated awareness of SD to a new level by using every interview as an opportunity to inform the public of his SD. Similarly, Diane Rehm, also an honorary member of the Board, has used her National Public Radio talk show and her autobiography, "Finding My Voice, " as platforms from which to educate the public about the disorder and how SD has affected her life and career. In 1999, to celebrate the tenth anniversary of the NSDA, the book, "Speechless: Living with Spasmodic Dysphonia" was published. Speechless is the biography of NSDA Board member Dot Sowerby's experience with SD as told to Betty Shonauer. Also featured in the publication are "I Climb Over My Voice" by Jean Newcomer and "An SD's Experience with Depression" by French O'Shields, D.Min. The book chronicles the beginnings of the NSDA and how the founding members transformed their loss-the audible loss of their voices-into an opportunity to help others. The organization provides support to SD patients through formal support groups, on-line activities, and periodic newsletters. NSDA is dedicated to research, awareness, and support.