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ALS patients, families assembled over a year to become 100-strong support group against ‘foreign disease’

Patients who have motor neuron disease, their family members and caregivers as well as volunteers gathered at East Coast Park in May 2022.

Patients who have motor neuron disease, their family members and caregivers as well as volunteers gathered at East Coast Park in May 2022.

Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease, is a degenerative neurological disease that killed British scientist Stephen Hawking and American baseball player Gehrig of the New York Yankees.
Neurons in the brain responsible for controlling voluntary muscle movement rapidly deteriorate so alert minds are trapped in a body that can no longer control basic functions. There is no cure for those afflicted.

Mr Ooi Lin Kah, 64, a former engineer who was diagnosed with the disease in 2013, first raised awareness of the disease in 2020 through an interview with TODAY. People suffering from the motor neuron disease and their families started reaching out to him through doctors. 

 

He has now self-published a 100-page book titled Dignity, Care and Hope to raise awareness of the illness and reach out to people suffering in the same way.
The book was written and compiled using only his eye movements to control a gaze-enabled device. 

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