ALS is on the rise, tracking cases could tell us why

The stark reality facing Jennifer Robb of Missouri – losing the ability to walk, eat, and now speak – underscores a growing crisis in the United States: Amyotrophic lateral sclerosis, or ALS. Also known as Lou Gehrig’s disease, this debilitating nerve disorder is projected to see a rise in cases, yet remains shrouded in mystery due to a lack of mandatory reporting across most states. In Valdosta, Jennifer's story exemplifies the daily struggle of living with ALS. Diagnosed two years ago, she has seen her ability to walk and eat solid food diminish, now relying on a text-to-speech tool to communicate. Her husband, Eric Robb, has had to quit his teaching career to become her full-time caregiver, highlighting the immense burden this disease places on families.

What Happened

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, leading to muscle weakness, paralysis, and eventually, respiratory failure. There is currently no cure for ALS, and the average life expectancy after diagnosis is a mere three years. Experts are observing a concerning rise in cases nationwide, with projections estimating nearly 33,000 cases in 2022 and a jump to 35,000 by 2026. The disease currently affects an estimated 1 in every 100,000 people. The rarity of ALS and the lack of mandatory reporting have made it difficult to accurately track its prevalence and identify potential environmental or genetic factors contributing to its rise. Jennifer Robb, along with two other residents of her Missouri county (population fewer than 40,000), have been diagnosed with ALS, a statistic that would likely remain hidden without improved tracking efforts.

The progression of ALS is relentless. For Jennifer Robb, the disease has rapidly eroded her physical capabilities. In just two years, she has lost her ability to walk and eat solid food, and now struggles to communicate, relying on a text-to-speech tool. Her husband, Eric Robb, has left his teaching career to become her full-time caregiver, a role that has become increasingly demanding. “Every month it seems like we have to change up our routine, we have to do things differently,” Eric shared, detailing the escalating challenges of daily care, which now require two hours for bedtime and waking. The emotional toll is immense, as Eric witnesses his wife’s decline and the irreversible loss of function.

While research efforts are underway, progress has been slow. Dr. Stephen Goutman, associate professor of neurology at the University of Michigan and director of its ALS clinic, acknowledges the urgency of the situation. “We hope to put ourselves out of business. We don’t want to be doing this,” he stated, reflecting the shared desire among researchers to find a cure or effective treatment. Despite caring for over a thousand individuals with ALS and following close to 300 patients at his clinic, substantial advancements in treatment have been limited since the introduction of Riluzole more than 30 years ago, which offers only a marginal extension of life – approximately two to three months. The current focus is on identifying environmental factors that may contribute to the disease, with suspicions centering around potential exposure to metals.

State Reporting Requirements and the Michigan Experience

The lack of mandatory reporting has been a significant obstacle in understanding the scope and potential causes of ALS. Currently, only a handful of states – Massachusetts, Vermont, Maine, California, Louisiana, New York, New Jersey, and Michigan (as of 2025) – require reporting of ALS cases. In Michigan, the state health department has yet to collect a single case since the rule was implemented more than a year ago due to a lack of guidance. This underscores the challenges in establishing effective tracking systems and highlights the need for clear protocols and coordination between state agencies and research institutions. The University of Michigan is currently testing a pilot collection system that will eventually be implemented statewide.

The value of mandatory reporting extends beyond simply quantifying the number of cases. As Ben Murdock, associate professor of neurology at the University of Michigan Medical School, explains, tracking data can reveal patterns related to environmental exposure. “Now we can kind of figure out where people have been living, where they come from, and hopefully we can start putting some of those puzzle pieces together,” Murdock stated. This information is crucial for investigating potential links between environmental factors and the development of ALS, which could lead to preventative measures and targeted research efforts.

Research and Treatment

Dr. Goutman and Dr. Murdock advocate for tracking ALS cases to better understand the disease’s environmental factors. They believe that knowing where ALS patients are located could help identify potential environmental risks, such as exposure to metals, which may increase the risk of developing ALS. This information could be invaluable in developing targeted interventions and treatments.

The projected number of ALS cases in the U.S. is expected to rise from nearly 33,000 in 2022 to 35,000 in 2026. Dr. Goutman notes that the rate of ALS has almost doubled in the 14 years he has been caring for patients, indicating a growing need for research and support. ALS is the most common rare disease, with a rate of about 1 in every 100,000 people.

Community Reaction

The Robb family’s experience in Missouri has been challenging. Eric Robb, Jennifer’s husband, has had to quit his job to care for her full-time. He described the disease as a “constant challenge” where “every day gets harder with loss of function.” He emphasized the importance of awareness and funding for ALS, stating, “People need to be aware of it. And the more they’re aware of it, the more funding there will be, the more help there will be for people with ALS.” Jennifer advocates for mandated reporting through ALS advocacy groups and said she believes more people with ALS would be seen and the disease would be harder to ignore if reporting were mandated.

Jennifer told us she thinks the disease is being ignored. When asked if more people with ALS would be seen and the disease would be harder to ignore if reporting were mandated, she said yes. She advocates for mandated reporting with ALS groups. She said she does not know how much time she has left. “You have to have hope,” Jennifer said.

National Registry, Funding, and Advocates' Concerns

A national ALS registry exists within the Centers for Disease Control and Prevention (CDC), but it relies on voluntary self-reporting, which inherently limits its accuracy. The CDC acknowledges that even with mandatory reporting, capturing 100% of cases remains unlikely. Advocates for ALS research emphasize the critical need for increased funding to accelerate the search for a cure or effective treatments. In early 2026, Congress approved a significant increase in funding – $315 million – representing the highest level of investment in ALS research to date. However, this figure pales in comparison to funding allocated to other diseases: $8.1 billion for cancer, $3.9 billion for Alzheimer’s disease, and $3.3 billion for HIV/AIDS.

Sofia's Take

The story of Jennifer Robb and the rising incidence of ALS serves as a poignant reminder of the fragility of health and the importance of community support. While the disease itself is devastating, the lack of comprehensive data has compounded the challenges faced by patients and their families. The fact that a small county in Missouri has seen three cases of this rare disease, undetected until recently, underscores a systemic problem – a lack of awareness and coordinated tracking. The commitment of Eric Robb to become his wife’s full-time caregiver exemplifies the strength of marriage and family bonds in the face of adversity, but it also highlights the tremendous burden placed on caregivers when illness strikes.

What’s particularly concerning is the slow pace of progress in ALS research. While scientists are exploring potential environmental links, the absence of a cure or even a significantly effective treatment leaves patients and their loved ones with limited options. The rise in cases, coupled with the slow research progress, demands a renewed focus on funding, collaboration, and data collection. It's imperative that states move swiftly to implement mandatory reporting systems and that Congress continues to prioritize ALS research alongside other critical health concerns.

Resources for Those Affected by ALS

For individuals and families affected by ALS, several resources are available to provide support, information, and assistance. The ALS Association is a leading organization dedicated to fighting ALS on multiple fronts: research, advocacy, and patient services. They offer a wealth of information about the disease, connect individuals with local support groups, and provide financial assistance for essential needs. The ClinicalTrials.gov website lists ongoing clinical trials related to ALS, providing potential avenues for participation in cutting-edge research. The Centers for Disease Control and Prevention (CDC) provides information on ALS and its prevalence in the United States. Local healthcare providers and neurologists can also offer guidance and connect individuals with specialized care centers.

What’s Next

The implementation of mandatory reporting in Michigan, while delayed, represents a crucial step toward better understanding the prevalence and potential causes of ALS. The pilot program at the University of Michigan will be closely watched as a model for other states considering similar measures. Continued advocacy for increased funding for ALS research remains essential, as does fostering collaboration between researchers, clinicians, and patient advocacy groups. The CDC’s national registry, while imperfect, will benefit from improved data collection and analysis.

The projected rise in ALS cases nationwide necessitates a proactive and coordinated response. While the path forward remains challenging, the increased awareness, coupled with ongoing research and advocacy efforts, offers a glimmer of hope for those affected by this relentless illness. The commitment to supporting families like the Robbs, and investing in research to uncover the mysteries of ALS, is a testament to our shared humanity and our unwavering pursuit of a healthier future for all.