ALS entered my life in 1995 when my young husband, Kevin O’Donnell, received his diagnosis. He was only 30 years old and it would be difficult to put into words how that day and diagnosis impacted us for six years, and me for nearly two decades now. I have written extensively about my years with Kevin, as they have shaped my entire life. For his love and companionship, I am truly inspired and grateful.

Since that day of Kevin’s diagnosis in May of 1995, I have been on an ALS (Amyotrophic...

Never underestimate the power of words. This is the speech that I gave with my late husband Kevin and our daughter Alina (both by my side) in 1995 at the Rilutek hearing in Washington, D.C. At the time, there were no drugs approved specifically for ALS. Rilutek proves to extend life expectancy in patients for three months, but those three months might mean the world to a patient. Perhaps they allow the...

On September 10, 2001 I was depressed. I was thirty-four years old and a single mother to an adorable eight year old, Alina.

That night, after work, I did what I had done daily since February 21, 2001. I read to my daughter Alina, tucked her into bed, and then retreated to my front porch.

Before February 21, 2001, my front porch was hardly noticed. I was simply passing through that space to get somewhere else. The porch was a place to put the groceries before carrying...