Health Care

Facing a neuromuscular disease diagnosis can be devastating, overwhelming and confusing, but empowering yourself to take charge of your care or your child's care is more important than ever

posted on July 7, 2014 - 9:21am
Whether you are newly diagnosed or have been living with a neuromuscular disease for years, there is arguably one guiding principle that is most important when it comes to making decisions about your care and quality of life: You are in charge. And with good reason. 

Drug development consultant Abby Bronson says early access to a new drug can jeopardize its full approval and long-term availability

posted on July 7, 2014 - 9:09am
Quest Summer 2014
Abby Bronson is the Duchenne muscular dystrophy program manager at Children's National Medical Center in Washington, D.C., where she works with various stakeholders to further therapeutic development for this disease. Bronson has a master's degree in business administration from the University of Pennsylvania and has managed new product development and marketing at biotechnology and...

Bioethicist Arthur Caplan says early access to drugs should not be determined by drug companies but by independent advisory boards

posted on July 7, 2014 - 9:09am
Quest Summer 2014
Arthur Caplan is the William F. and Virginia Connolly Mitty Professor and founding head of the Division of Bioethics at New York University Langone Medical Center in New York City. He holds a doctoral degree in the history and philosophy of science from Columbia University, has authored or edited 32 books and more than 600 papers, and has served on national and international committees as an...

FDA staffer Richard Klein says people often underestimate the risks and overestimate the benefits of taking medications that have not been through the full FDA approval process

posted on July 7, 2014 - 9:09am
Quest Summer 2014
Richard Klein is the director of the Patient Liaison Program at the Office of Health and Constituent Affairs at the U.S. Food and Drug Administration (FDA). Q: What is the most common misconception that patient communities have about the FDA's accelerated approval mechanism?

Neuromuscular disease specialist and biotechnology company employee Timothy Miller says it can be a significant risk and financial hardship for a small company to supply a drug that has not been through the full approval process

posted on July 7, 2014 - 9:09am
Quest Summer 2014
Timothy Miller has been a university-associated neurologist specializing in neuromuscular disorders who has recently moved to the biotechnology industry. He has been the director of the MDA-supported pediatric neuromuscular disorders clinic at Children's Clinics for Rehabilitative Services in Tucson, Ariz.; an assistant professor of neurology, pathology and pediatrics at the University of Arizona...

This second of a series of three stories covering the 2014 MDA Clinical Conference discusses pain in neuromuscular disorders

posted on April 4, 2014 - 9:52am
The 2014 MDA Clinical Conference, held in Chicago March 16-19, was attended by some 500 people, mostly physicians and other health care professionals.

This first of a series of three stories covering the 2014 MDA Clinical Conference discusses implications of new types of genetic testing

posted on March 28, 2014 - 10:57am
“Knowing, if not all, is almost all,” said Matthew Harms, a neurologist and neurophysiologist from Washington University in St. Louis, in his presentation on genetic testing for neuromuscular disorders at the 2014 MDA Clinical Conference, held in Chicago March 16-19.

MDA's 2014 Clinical Conference on neuromuscular disease brings together health professionals from across the country and focuses on improving lives through excellence in care

posted on March 7, 2014 - 3:01pm
"Optimizing Care: Improving Lives Through Clinical Excellence" is the theme of the 2014 MDA Clinical Conference, which takes place March 16-19 at the Hyatt Regency in Chicago. A secondary theme — "I am progress" — also will be in evidence, referencing the crucial role that MDA clinic team members nationwide have in providing expert medical care in neuromuscular disease and identifying new...