How Open Access Scholarship Saves Lives

Gabriella Reznowski’s son, Xavier, was diagnosed with a rare genetic disorder in 2012, 14 long years after she first noticed the developmental delays and helped him ride out the seizures caused by the disorder. The most current information that describes it is only found in research journals, which often require subscriptions to access. That’s something Reznowski, humanities librarian at Washington State University Libraries in Pullman, would like to change.

The name of Xavier’s disorder is virtually unpronounceable: megalencephaly, polymicrogyria, polydactyly, and hydrocephalus syndrome, or MPPH for short. First identified in 2004, the syndrome is little understood, with no known cause and only about a dozen cases worldwide.

“I think that the case for open access really hits home when you have a situation where you are trying to find out as much as you can about an issue for which there is very little published information,” Reznowski said.

“Due to how rare a disorder this is, there is very little out there on the syndrome and virtually no information in popular sources, such as magazines, newspapers, or even blogs,” she said. “It is really difficult when you want to access a research article and you find out that you have to subscribe to the journal or even pay a price for temporary, 24-hour access to the article.”