The Disease That Took Sandra Bullock’s Partner Life: What is ALS?

Despite the ALS Ice Bucket Challenge going viral in August of 2014, the disease is still claiming lives almost a decade later in August of 2023.  

Bryan Randall, the partner of Sandra Bullock, has just passed away after a behind-the-scenes battle with a medical condition. Although Bryan is no longer with us, Bullock’s sister, Gesine Bullock-Brado, explained on Instagram that “… there is some comfort in knowing he had the best of caretakers in my amazing sister and the band of nurses she assembled who helped her look after him in their home.” 

Once again, ALS is shaping headlines across the country. But what is the disease and the challenges that come with it? 

Amyotrophic Lateral Sclerosis 

Let’s start with its formal name. 

Amyotrophic lateral sclerosis, otherwise known as ALS, is a “progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord” according to the ALS Foundation. 

More specifically, the death of motor neurons in the brain is what is responsible for losing “the ability to speak, eat, move and breathe,”  which can occur in people with the disease. 

The Challenges of ALS 

As if losing the ability to perform four of the most common human functions wasn’t bad enough, there are four primary challenges associated with ALS today per ALS Pathways. 

Rare Yet Rapid 

Although it has become commonly known thanks to the Ice Bucket Challenge, which raised over 220 million dollars, ALS still needs additional research. Unfortunately, the enrollment rate for patients to participate in clinical trials “can be slow” since the disease is classified as rare. 

Variation in Speed  

The development of ALS is not linear or straightforward. The progression of the disease in the body varies wildly, making it difficult to study. Patients can either pass away less than a year after the diagnosis or they can continue to live 10 or more years. 

Not Enough Biomarkers  

A biomarker is defined as “any measurable substance that changes in quantity or that appears or disappears with a change in the body’s state.” These substances can include chemical changes in blood, urine, cerebral spinal fluid, or any “structures in the body that change with disease state.” Unfortunately, there are not enough biomarkers that can be observed for ALS.  

Too Many Measures  

To document and record “clinically meaningful changes in ALS,” certain outcome measures must be observed. These can include survival time and functional status, for example. The problem, however, is that each method of measuring changes “has its strengths, but none are perfect.” 

ALS, while trending at one point, is not a fad. It’s a permanent disease that has serious life implications.