Congressional Briefing May 7, 2014

On Wednesday, May 7, we conducted a briefing to staff members of both houses of Congress. A representative from NIH also attended. The speakers were (1) Claudia Testa, MD, PhD, Associate Professor of Neurology, Virginia Commonwealth University, Associate Director of Clinical Research, VCU’s Parkinson’s & Movement Disorder Center, Joan Massey Chair in Clinical Parkinson’s Disease, (2) Sara Donaldson and Prudy Bradley, sisters with Essential Tremor (ET) that are part of a family in which all 12 siblings have or had ET, (3) Soren Lowell, PhD Assistant Professor, Department of Communication Sciences & Disorders, Syracuse University, and (4) myself.

Dr. Testa provided an overview of Essential Tremor (1) what its are effects – the problems its causes for those who have it, (2) what is known about ET, and (3) what we can do to help those with ET. Prudy and Sara then got up. Sara’s voice tremor is so bad, she can’t speak (she has a pen & pad of paper with her all the time). As a result, Prudy spoke for both of them and related how ET had impacted the quality of their lives. Dr. Lowell is currently conducting a study, funded by NIH, on the impact of Octanoic Acid on Voice Tremor caused by ET. I concluded the presentation by relating how I was fired from a senior management position as a direct result of my voice tremor.

There was real interest on the part of those who attended. A number stayed afterwards to learn more about Essential Tremor.

Peter Muller
Executive Director
HopeNET