The National Institute of Health in the United States of America held a workshop on the Burden of Muscle Diseases on the above dates. The US congress mandated by law that an estimate of the social and economic impact of these neuromuscular diseases be measured. The following are my notes and information about this meeting. (Richard Weston January 26th 2005) Please note that speakers sometimes talked fast and I could not make notes but we will add the link to the official site when that is one. It is very evident that because of motivation/Apathy Issues in that people with DM are being underreported in the area.

Richard's Summary: It is important to measure the burden of muscle diseases so that it will be more evident of the impacts and greater resources can be devoted to management and treatment. The social burden is the difference between a person's expectations and reality. The economic burden will be studied tomorrow. For caregiving the major factors that affect parents is the Child's behavior and also ambulation (or needed cane or wheelchair). There is a major study ongoing regarding support and DM1 in Canada. This will have interesting and long-lasting results.

Introduction

Moderators
    Richard Lymn, PhD/Niams/NIH
    Richard Moxley III MD University of Rochester