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TIRCON meeting in Warsaw

Posted by Patty Wood
Patty Wood
Patty Wood has not set their biography yet
User is currently offline
on Wednesday, 07 August 2013
in Research

I wrote this column for our June/July organization newsletter and thought it had information worth sharing with a broader audience about our TIRCON activities.

I recently returned from visiting Warsaw, Poland, for the first time. I was there as the representative for the NBIA Disorders Association for our second meeting of the General Assembly for the European Union grant, Treat Iron-Related Childhood-Onset Neurodegeneration, or TIRCON.

TIRCON - Warsaw, Poland

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Tags: Research, TIRCON

BrainGate research provides hope for the future

Posted by Patty Wood
Patty Wood
Patty Wood has not set their biography yet
User is currently offline
on Tuesday, 06 August 2013
in Research

 

By the time my daughter, Kimbi, was 4, she had already lost the ability to walk, talk, swallow and even lift her head. She could still move her hands and fingers, and her classroom aides tried to get her to hit a button connected to a speaking device so she could tell them what she needed. It was trial and error, and I felt we were missing so many things that her bright eyes told me she wanted to say.

Kimberly WoodWhen she was about 10, I heard of a computer with an eye gaze system that worked by using the eyes to follow dots on a computer screen. It sounded promising, so we found one at a school and they let us use it to see if it worked for her as it cost some exorbitant amount to purchase one. I worked with Kimbi three times a week, trying to help her master the technique.

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