Brooke Ellison's colleagues define her as a powerful force on Long Island.
She has been a candidate for elected office; she's an influential writer, a university professor and strong advocate for stem cell research.
But as powerful as her associates say she is, Ellison needs a source of uninterrupted power -- electrical power -- to maintain the ventilator that keeps her alive.
Regionwide, there are hundreds of people like her, dependent on myriad medical devices. And some found themselves in precarious straits immediately after superstorm Sandy struck. The lights went out and with it their lifelines.
"People who are on ventilators are dependent on power for their very survival," said Ellison, the director of education at Stony Brook University's Stem Cell Research Facility.
Ellison, who is paralyzed from the neck down, the result of being struck by a car at age 11, volunteered to turn her home into a living laboratory, allowing scientists to study an innovative power-generating system that could provide an off-the-grid alternative.
For six months this year, Ellison's home relied on a mobile solar generator called STAR, a self-sustaining system that functions even if the grid is down.
The acronym stands for Stationary or Transportable Available Resource, a mobile solar generator with battery storage that can be parked in a driveway. It connects to a home via cables and looks a lot like the permanent solar panels often seen on rooftops.
Field data collected from Ellison's Stony Brook house are providing the basic information required for U.S. Food and Drug Administration approval. If given a federal OK, the device ultimately could be used as a medical-grade, clean-energy resource for emergency situations.
The importance of a STAR unit, its inventors say, is its portability.
Developed by Nextek Power Systems in Bohemia, the technology is similar to larger units the company designed for resource-poor regions of the world. STAR, according to Nextek engineer Wayne Gutschow, is a power source created specifically for life support.
"The generator is designed to be put on site for people who are in critical need of energy," Gutschow said. "Normally, life support equipment uses very little energy. But given that you have other loads on the house you have to be able to support the home so that you can live in it."
Gutschow and his Stony Brook colleagues say they would like to see STAR units stored at fire stations and deployed to patients' homes when disasters knock out power. "The technology is scalable," Gutschow said. "We can make it bigger; we can make it smaller. It's an open architecture system."
Nextek put larger units in Haiti after the 2010 earthquake. The firm also has deployed its large units to parts of Africa where electrical service and lighting have been unreliable.
Unlike gasoline-powered generators, STAR stores its energy and it is not subject to fuel shortages, as was the case with gasoline-powered generators after Sandy, when gas was difficult to find.
Ellison, Dr. Miriam Rafailovich of Stony Brook and Gutschow worked with a team of students who helped adapt the system to household usage.
The team of professionals and university engineers were aided by Alex Tang, a high school student from Bellevue, Washington, who heard Ellison lecture about people on life-support systems during the storm and offered to help.
Ellison also heads a Stony Brook University initiative called VENTure, a think tank involving faculty members who volunteer time to work on projects that aid ventilator users.
The STAR research project was supported by grants from the National Science Foundation and the U.S. Department of Energy.
"Power outages can cause severe hardships for some people. They're really life-threatening situations and it really wasn't until these superstorms that we realized how serious they can be," Ellison said.
Tropical Storm Irene tore through the region in 2011. Sandy followed on Irene's heels in 2012.
Electrical power for home-based life-support systems took emergency management officials by surprise, said Rafailovich, who holds the title of distinguished professor in the department of materials science at Stony Brook. She led the STAR research project.
Better medical treatments and innovative technologies over the years have meant more people can avoid institutional care and remain at home. But trouble abounds in the eye of a superstorm, Rafailovich said.
When Sandy made landfall on Oct. 29, 2012, an estimated 90 percent of Long Island Power Authority customers lost electrical service. Some lost power for several hours, while others were without it for weeks.
At the time of the storm, more than 3,000 Long Island residents had signed onto LIPA's Critical Care Program, which consisted of representatives from the now-defunct utility telephoning patients, or their caretakers, warning of severe weather ahead.
These patients include some of the most disabled. For example, some were on electrical suction devices. Others were relying on oxygen concentrators, kidney dialysis machines, LVAD heart implants and rocking bed ventilators, to name a few. The latter devices are electronically driven beds that assist breathing.
In the midst of the Sandy-triggered power outages, Rafailovich said she was concerned about those in medical need and was especially worried about Ellison, her colleague.
Regardless of how ill or disabled, patients were required to find their own alternate source of power. "This is a very, very frightening situation," Rafailovich said. "We are hoping to eliminate that kind of fear through this project."