My brother was diagnosed with ALS in the summer of 2009.
My family and I have watched his quality of life steadily worsen despite all our efforts. We have tried every known medication to no avail. The disease progresses inexorably. Throughout all this, the thing that has amazed us most is the strength and positive outlook my brother continues to have.
This is the hallmark of ALS. While the patient slowly loses the ability to control all the muscles in his body, the mind remains intact. My brother’s personality is unchanged and his desire to communicate with us, if anything, has actually grown stronger over time.
All I can hope to do today is to give him, and others like him, a voice. I founded the Technology Against ALS Foundation for that purpose.