Quest Summer 2014

July 1, 2014 - September 30, 2014

Cover Story

Balancing parenthood and neuromuscular disease is not just possible — many dedicated moms and dads who live that reality every day say having kids is the best decision they've ever made

Matthew Martin and Amanda Hall have more than a few things in common. They’re roughly the same age — Martin is 28; Hall is 30. They both call the state of Texas home — Martin in Rowlett; Hall in Glenrose. Then there’s the fact that each lives with a neuromuscular disease — Martin was diagnosed with Duchenne muscular dystrophy (DMD) at the age of 8; Hall with congenital myopathy in her early 20s.

Features

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
Questions and answers about the FDA and its process for approving drugs
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Departments

In Focus

Research Updates

Quest Extra

Four professionals recently talked with Margaret Wahl, MDA’s medical and science editor, sharing their thoughts about access to drugs that have not gone through the full approval process
Drug development consultant Abby Bronson says early access to a new drug can jeopardize its full approval and long-term availability
Bioethicist Arthur Caplan says early access to drugs should not be determined by drug companies but by independent advisory boards
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
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