Disease Research Report
Submitted by: Ellen Burns, Medical Liaison
On a rainy Sunday morning in May, Dr. Robert H. Brown Jr. drove north to Kittery Point Maine to have lunch with Larry Deater, Rory Robb, and Barry and Ellen Burns. Dr. Brown is the Director of the Cecil B. Day Neuromuscular Laboratory at Massachusetts General Hospital. Besides catching up on one another’s lives, the meeting was to provide an update on the research being done on HSN-1. Hereditary Sensory Neuropathy Type 1 is the name of the disease that affects many members of the family of Alvin and Ellen Wilson Deater.
Dr. Brown has long been a champion of research on this rare genetic disease. It has been more than twenty years since Dr. Brown met Larry at Massachusetts General Hospital. Through the subsequent years Dr. Brown has met many members of the Deater family and has doggedly pursued the genetic cause of HSN-1. Dr. Brown is an internationally known expert in amyotrophic lateral sclerosis, or Lou Gehrig’s disease. Most of his research focuses on that devastating neurological disease. But he has also dedicated extensive time and resources to the search for a cause and treatment for HSN-1.
Dr. Brown and those who work with him have collaborated with scientists from around the country and the world to unravel the mysteries of this rare disease.