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Voice For Joanie

Joanie

Shirley Fredlund: I would talk with her on the phone and notice the slurring in her words. I would go to visit her and notice she was having more difficulty; this continued to a point where she was unable to talk and move. The only thing she was able to do was blink. We used to talk to each other with a letter board. I would point to the letter and she would indicate by blinking which letter she wished to use and we would spell out words. And I thought, there has to be a better way

Joanie

Shirley – Joanie was a friend of mine, we went to school together.

Speaker – Joanie was diagnosed with Lou Gehrig’s disease.

Shirley – I would talk with her on the phone and notice the slurring in her words. I would go to visit her and notice she was having more difficulty; this continued to a point where she was unable to talk and move. The only thing she was able to do was blink. We used to talk to each other with a letter board. I would point to the letter and she would indicate by blinking which letter she wished to use and we would spell out words. And I thought, there has to be a better way.

Speaker – Shirley Fredlund and volunteers from the Danbury Area Computer Society did find a better way. After finding the hardware and software necessary to help Joanie communicate more effectively they began a community fund raising drive to purchase the equipment. Joanie died however a few days before she got to use it, but because of her struggle many more people with paralyzing diseases are getting help.

Building hope in the blink of an eye

But now, in her early 50s, Joanie Margaitis was fading fast. Her limbs were withered and lifeless. She couldn't move. She could barely breathe.

All of it the collective fallout of amyotrophic lateral sclerosis, a terminal neuromuscular disease. The affliction is best known as Lou Gehrig's disease, in remembrance of the fallen New York Yankees legend.

Read more of this story at the Danbury News Times


Note:This excerpt was taken from a videotape about VFJ.

Joan was a friend of Shirley Fredlund’s who died from ALS. Shirley has dedicated herself, along with other volunteers to helping those with ALS communicate as they struggle with this disease. People with ALS desperately wish to speak out, but unfortunately may not be able to. Shirley has unselfishly come to the aid of many people to help make a small miracle happen – communication. Many computers and assistive technology devices have been donated to those in need with the help of generous donations.Shirley is in need now of donations to allow her to continue to make generous donations to those who request help. Please won’t you consider donating, so Shirley will be able to fullfill all the requests for assistance. Please note Voice for Joanie receives it’s funding solely from your donations, not from the ALS Association.

If someone you know with ALS is in need of technology to help them better communicate please contact Shirley.