In 2005 Chris Hempel gave birth to twin daughters Cassi and Addi. In 2007, she and her husband learned that their girls had a rare, fatal disease called Neiman Pick Type C.

Four years later, Hempel describes herself as a "advocist" for rare diseases. She's an advocate for scientific research but also an activist seeking to bridge the gap between patients and researchers. One of her primary messages is this: If patients donate tissue (skin, in her case) that contribute to science, then they should get to know the results and participate in the research.

Ethicist Arthur Caplan had an excellent piece about stem cell hype last week on Science Progress, a publication of the Center for American Progress. Caplan is Director of the Center for Bioethics and the Sidney D. Caplan Professor of Bioethics at the University of Pennsylvania.

He starts by saying that yes, some have over-hyped the promise of stem cell research, saying:
Alan Trounson is President of CIRM

Since I arrived at CIRM late in 2007 I have maintained a tradition of presenting some of the top science journal papers from the previous month or two at each of our Board meetings. Beginning last month, I decided this would be easier to digest in a written document than in PowerPoint slides amid a harried board meeting. You can see an archive of these periodic stem cell reports on our website.

Normal aging takes many decades to create major changes in our cells, so it is very difficult to study. As a result, very little is known about this fundamental inevitability of life. But that may change with the help of an unfortunate child, who by the bad luck of a single point mutation developed a rare disease that results in aging at eight to 10 times the normal pace.