Here is a draft of the letter that I intend to send to the TV personalities when this campaign kicks off. Since we are using KenSr’s Rolling Over ALS Tour as a focal point, I propose that we start sending our emails to the TV personalities beginning April 1st.
I am writing you about Lou Gehrig’s disease. I just want to let you know that one of my heroes who has this incurable disease is riding his electric power chair from
I also have Lou Gehrig’s disease or as it is also known, ALS. I am 70 years old and a retired engineer/executive, so I am much luckier than the many that have this paralyzing disease who have their lives ahead of them, many with young children. My retired career as a cruise lecturer came to an end when ALS took my speech away, confined me to a wheelchair and made it necessary to have help breathing as my muscles became paralyzed.
Awareness is so important. I did not know anything about the disease before I was diagnosed in 2004. It shocks me on how many health care workers, including doctors, know little about ALS. It is equally amazing that there is no simple diagnostic test for ALS. It troubling to learn that those who served in the military have double the rate of having this illness than the general public. Why this alarming fact is so, no one knows.
Maybe you can help change this by shining a light on this “orphan” disease. You can make a huge difference for all of the 30,000 Americans now on the path to complete paralysis.With best wishes,