The Family Conference, which will be Webcast, is planned as an opportunity for families to meet each other and to meet and learn from researchers and physicians who specialize in these diseases.
|The new way of thinking about CNMs is that they're an umbrella under which X-linked MTM and other CNMs fall.|
Among the speakers are Alan Beggs, a molecular geneticist at Children's Hospital in Boston, who has had MDA support to study centronuclear and other congenital myopathies; and Susan Iannaccone, a pediatric neurologist at Children's Medical Center in Dallas who has received MDA support for neuromuscular disease research and directs the MDA clinic at her institution.
Recent advances have shown that the course of disease in centronuclear myopathies is highly variable, with myotubular myopathy being the most severe form. (See Taking a Closer Look at Myoubular Myopathy.)
The cost of attendance is $30, which includes meals but not hotel accommodations at the Houston Marriott at Bush Airport.
The Webcast is free.