Welcome to my blog! Essentially I just wanted a place to start sharing more of our personal life and our journey as my husband battles ALS. It is a complicated disease and diagnosis and incredibly hard to comprehend what it means and so I just wanted an outlet to share my thoughts, what this process looks like, what we are trying and provide some source of advocating for ASL.

This disease plagues approximately 5,000 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that at least 16,000 Americans may be living with ALS at any given time.

And given that, there is still very little information, knowledge, advocation or treatments for the disease.

My grandmother died of ALS 24 years ago and yet there are only just a few new treatments this year for the disease which slow the progression a little bit. We don’t know much more about the disease either. TWENTY-FOUR YEARS and no more new knowledge.

Please feel free to leave comments with questions or even advice if you are one of the horrible ones affected by this disease. And thanks for following our journey.