Popping in

Hello, fellow bloggers and bloggettes! I've had a number of 12-14 hour days and no time to post a new thread lately. This is what we've been doing--

We're conducting a retinal imaging study to try to improve the diagnosis of a childhood neurodegenerative disease that causes blindness. Visual loss generally is the first sign of the disease, but it is often misdiagnosed for years until seizures begin. The kids are often subjected to many uncomfortable diagnostic tests until a diagnosis is made. Although there is no treatment for the disease, we are hoping that at least an early diagnosis will help families get the right kind of care at an earlier stage. Also, once new treatments are available, we may be able to use our non-invasive imaging as a convenient way to follow improvements during the course of treatment.

Over the past few days, our research team has attended a convention where many affected families are gathered. We rent a suite at the hotel, fly in the research team, borrow equipment from the imaging companies, and recruit study subjects to come up and have their pictures taken. There are no eyedrops and nothing touches the eye. It's been a very successful study, so far! I'm always impressed at how much families want to help us with this research, even though it doesn't directly help them. We couldn't do it without the families.