Voice For Joanie Expands Communication Horizons For Newtowners With ALS

By John Voket

Newtown resident Kathy Fisher has ALS, also known as Lou Gehrig’s disease.

And while the sixth grade science teacher is beginning to lose some of her ability to speak as a result of the progressively debilitating condition, her excitement becomes palpable when she talks about learning how to send emails to her students by typing with her eyes on a computer system loaned by a small regional nonprofit called Voice for Joanie.

“It’s like science fiction,” Ms Fisher told The Newtown Bee during a brief chat about how the organization responded to a call for some adaptive equipment that has and will continue to help her communicate with the ones she loves, long after ALS undeservingly strips the educator of her ability to express her thoughts and wishes vocally.

“I contacted Voice for Joanie as soon as my own voice started to fail,” Ms Fisher said. “First [Voice For Joanie founder] Shirley Fredlund showed up with a voice amplifier system.”

Voice For Joanie was founded in 1990 in memory of Joanie Margaitis, a Connecticut resident afflicted with ALS. For the last 18 years, Voice For Joanie has provided assistive technology, free of charge, to more than 600 people with ALS and other debilitating diseases in Connecticut and neighboring states.

The nonprofit, 501(c)(3) organization is operated solely by volunteers and Ms Fredlund.

The Fishers first piece of equipment most recently was upgraded to a Mac-based Eyegaze system, which after some training with a Voice for Joanie volunteer, will permit Ms Fisher to increase her ability to communicate, even as she begins to lose the ability to use her hands to type on a computer keyboard.

“They just brought that last week, so I’m still getting used to it,” she said. “Hopefully, when I get good at it, I’ll be surfing the net, checking email, and even playing some simple computer games.”

Local pediatrician Laura Nowacki had a similar experience when she contacted Ms Fredlund on behalf of her mother-in-law, Martha, who died last August following a three-year battle with ALS.

“Shirley showed up the very next day after I called her,” Dr Nowacki recalled, “and the equipment helped out a lot.”

The first piece of equipment the Nowackis received was a voice enhancer, similar to the technology the Fishers first used, except this more advanced machine also helped make her mother-in-law’s slurring speech more understandable.

“While her ALS was advancing rather quickly, this was perfect for her at first,” Dr Nowacki said. But as the disease advanced, Dr Nowacki began a protracted battle with her mother-in-law’s insurance company to obtain a more advanced item known as a DynaVox.

That system uses technology similar to the ordering system in a fast food restaurant, where specific concerns or requests are tied to buttons on a large brightly lit keypad, so the user only needs to touch a button or two in order to articulate complete thoughts via the computer’s voice activation.

Ironically, the lengthy fight to get the adaptive technology was won after the family was forced to purchase its own system — which cost more than $6,000. And soon after it arrived, Martha Nowacki became too weak to use it, so the Nowacki family decided to give the equipment to Voice for Joanie so others could benefit from it.

“We fought with the insurance company all summer to get that DynaVox, and then after Martha passed away, the insurance company reversed their decision and wanted us to pay them back for it,” Dr Nowacki said. “But we were very happy to be able to pass it on to Shirley so others could use it.”

On Saturday, May 1, Voice for Joanie will hold one of its largest annual benefit events to help raise money to add more technology to its lending closet, to respond to the increasing calls from families like the Fishers and the Nowackis.

The annual Pizza Party and Magic Show is being held at the Holiday Restaurant located at Veteran’s Plaza on Route 7 in New Milford from 6 to 10 pm. Children over 10 are $10, and adults are $20. The party will feature Marty “Magic” Steinberg and RNM DJ entertainment.

Dr Nowacki says that Voice for Joanie is the first call a family should make if they receive a diagnosis of any type of disease that negatively affects communication.

“Now that we’ve worked with them for so long, we feel like we’re part of the Voice for Joanie family,” Dr Nowacki said.

Ms Fisher echoed that sentiment.

“The people at Voice for Joanie are extremely caring and compassionate,” Ms Fisher said. “They will do everything they can for anybody like me who is experiencing any kind of speech difficulty, so they can continue to communicate with the people they love.”

To contact Voice For Joanie, call 860-350-9034 or email any questions or comments to voiceforjoanie@juno.com.

Learn more about the cause, and ways to help their mission by visiting www.voiceforjoanie.org.