On June 18, 2023, Eric passed away peacefully after battling ALS for over a decade. In honor of Eric, this website will remain up to document his inspirational blog posts, most of which he typed with his eye tracking device. Hover over “Battle Updates” to check out his posts. To make a donation on behalf of Eric to ALS research and patients, please visit Eric’s GoFundMe page.

Eric Von Schaumburg's Battle with ALS

On the night of June 19, 2013, Eric was diagnosed with ALS commonly referred to as Lou Gehrig's Disease. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, eventually paralyzing the patient, while their mind remains completely intact.  They are, essentially, trapped in their no longer functional body.  The average life expectancy is 2-5 years from first symptoms (March 2013 for Eric).

Everything began a few months prior when he noticed his speech beginning to slur. He eventually was referred to a neurologist. After examining an MRI and blood work, the doctor found no abnormalities. The doctor's diagnosis was based on Eric's dysarthria (speaking problems), tongue and body fasciculations (muscle twitching) and excessive saliva.  Any other disease causing these same symptoms would have shown up on the brain/spine MRI or through the blood work they tested. ALS is referred to as an "exclusionary diagnosis" because there is no one test that can diagnose an individual. 

The support Eric and our family have continued to receive has truly been unbelievable! We are so grateful to everyone who has joined the fight against ALS. Thank you all!