My name is Laura. My husband died of ALS 22 years ago. Rob was a software analyst, a runner, the love of my life, and father or our two children. Our children were 13 and 9 years old when he died.
We lived with ALS for five years.

We tried all the medical alternatives including stem cell therapy in Kiev. Nothing worked. Rob had a number of surgeries before being diagnosed with ALS. That is how it goes.

We did our best to live in hope, to cherish every moment we had with Rob. Our door was open to a wide and loving circle of family and friends. We didn’t walk the path alone and yet the heartache of losing Rob we carried with us remains. It is a sacred sadness that defines me and I live in deep joy and fervent gratitude for every moment we had as a family of four.

Rob taught us about unconditional love, finding humor in the simple pleasures of life, and to fight fearlessly and lovingly for everything we believe in. I’d like to be a vessel of understanding and support for my brothers and sisters living with ALS. I hold the young children with an ALS parent in my heart every day. As an educator, I advocate for young children living with ALS trauma. It’s invisible, it affects our memory, and the element of time can unknowingly trigger horrible panic. Rightly so. I’m here to help wherever I can. In memory of my husband and in honor of my two children making the most of their lives after losing their father. Thank you for the opportunity to have a voice.