I have some difficult news…

As many of you know, these last two years have brought both the joy of my life with my daughter’s birth, as well as the challenge of my life as I began to struggle with my health a few months after her arrival. After inconclusive neurological exams, treatment for Lyme’s disease and co-infections, and not experiencing significant progress, I went to the excellent medical team at UCSF for an evaluation. In mid-May 2020, they confirmed that I have amyotrophic lateral sclerosis (ALS), (also known as motor neuron disease or Lou Gehrig’s disease). 

Levana and I have been and are continuing to process this gut-wrenching news and working to learn all we can so that we can take action to address our most immediate needs. ALS is a brutal disease and historically fatal. Nearly 100% of people who have it die. The average time from diagnosis to death is 2.5 years. But after reading and talking to a number of people with ALS and medical professionals, I believe that we are on the cusp of making ALS treatable, if not curable. My goal is to slow the disease progression as much as possible, giving me more time to spend with my wonderful family and friends, and also bridge to promising drug therapies that are on the horizon. To do that, I need your support.

Love and Strength, Casey