Providing a voice for ALS victims
By RONALD DEROSA
08/20/2008




TORRINGTON - The Torrington Rotary Club held an event Tuesday focusing on a computer system that allows individuals with Lou Gehrig's disease to communicate.


Lou Gehrig's disease is the common title for Amyotrophic Lateral Sclerosis, or ALS. The disease is highly detrimental to the nervous system, often precluding one's actual capacity to speak.

The new technology is called Eye-gaze Response Interface Computer Aid, or ERICA for short. It is a system that allows an individual incapable of speaking to communicate by simply blinking into an infra-red sensor. The recorded numbers of blinks are then translated into text displayed on a screen of what the person wants to say. ERICA was promoted by Voice for Joanie, an all-volunteer organization, which highlighting the system's speech synthesizing capabilities.

"If they can use their eyes, they can use whatever is hooked up to ERICA," said Shirley Fredlund, president of Voice for Joanie.

This ability to actually communicate would facilitate conversation much easier between the individual with the disease and assisting family members or care takers, she said.

Fredlund continued to highlight other technological goals for ERICA, including the possibility of turning on an air-conditioner or a lamp simply by blinking into the sensor.
The vital link between nerves and muscles is disrupted in someone with ALS, limiting the victim's physical capabilities, which many times results in being restrained to a wheel chair.

"You are trapped within your own dying body," said Frank Ruiz, vice president and Fredlund's husband.

Fredlund and Ruiz started Voice for Joanie 18 years ago when their friend Joanie Margaitis was diagnosed with ALS. Fredlund received a $1,500 grant and hardware donated by IBM, which she used to obtain a computer system with a speech synthesizer. The goal was to help Joanie in her communication abilities, being that she was limited by the disease.

Voices for Joanie now provides assistance to 620 individuals throughout Connecticut, Massachusetts and Rhode Island, Ruiz said. ERICA can cost between $500 and $10,000 depending on the needs of each individual, he said. The couple hopes to raise funds to make the system attainable for any person with Lou Gherig's disease, regardless of economic status, Fredlund added.

"The ultimate goal," said Fredlund, "is to help as many people as I can, as quickly as I can."

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