Adam Foye, a New-Jersey sixth grader, has lived much of his life with weak muscles and uncertainty. Although his symptoms match most closely with the rare muscular disorder, Centronuclear Myopathy (CNM), his genes tell a different story. The 11-year-old’s tests show no issues with the genes that indicate CNM. Adam’s mother, Sarah, said in a recent TIME story, “it has taken a very long time to get no answers.”
Catherine Cooling Davis is 28, newly married, getting her MBA, and living with metastatic neuroendocrine cancer. But, she’s not letting this life-threatening diagnosis stop her from being her own best advocate in the face of uncertainty. Neuroendocrine tumors (NET), most recently in the news as the type of cancer that killed Steve Jobs, is slow-growing and can begin anywhere in the body that has neuroendocrine cells.
As vice president of public affairs at the Association of Clinical Research Organizations (ACRO), John Lewis understands the importance of supporting medical research. “Ultimately we’ll all be patients,” says John. However, he’s also quick to note that, “In the United States, we have less than 4 percent of the population who participate in clinical trials. Yet, about half of clinical trials are done in the United States. So the math doesn’t work."
The magic of science-- Geoffrey Ling, deputy director of the Defense Sciences Office at DARPA, explained that in order to build meaningful partnerships, there needs to be a mutual understanding that the scientific community is not only made up of scientists, but also includes regulators, legislators, manufacturers, and patients. These strategic partnerships are essential if we really want to improve the speed and efficiency in which we move innovations into the hands of people that need them.