NORTH TEXAS (CBS 11 NEWS) – Marcie Gibson’s bedroom is quiet except for the soft, constant pulses of air moving from her respirator and the electronic ticking as she typed on her word processor.
Eye tracking technology allows Gibson to use the only body part she can to type. Much like on a touchscreen, each time her computer recognizes a letter it makes a noise; Tick. Tick. Tick.
Gibson is completely paralyzed by ALS and lies in her wheelchair, with her specialized computer suspended in front of her. The technology allows her slowly type out her thoughts.
From her quiet bedroom Gibson wants to start a national campaign to ask the ALS Association (ALSA) to spend the more than $100 million raised from people taking the Ice Bucket Challenge solely on research.
“ALS patients would benefit from the research,” Gibson typed out. “With this amount of money we never know what might come out of it. Plus, people believe their donations are going 100 percent to research.”
The ALS Association’s website shows less than a third of donations actually goes to research. The majority of funds go to other ALS services. Gibson began a campaign on ALSA’s Facebook page asking them to dedicate all the Ice Bucket proceeds to research.
“And I am asking others to post also, to persuade them [ALSA] to put all Ice Bucket Challenge [money] into research,” Gibson said.
Tanner Hockensmith, the Executive Director of the ALS Association Texas Chapter, said the organization does a lot of things – including outfitting patients with wheelchairs and computers, operating clinics and increasing awareness.
“The Association will undoubtedly be able to invest more dollars into research, but we will also stay committed to our mission and provide care for those living with this disease,” Hockensmith said.
Still, just how much of the Ice Bucket Challenge money goes into research is up in the air and Gibson hopes her campaign will steer the money toward research.
“ALSA is saying they must decide where the money would have the most impact,” Gibson wrote. “Finding a cure would have a pretty good impact.”
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