ANN ARBOR, Michigan – The United States could see about 35,000 people living with amyotrophic lateral sclerosis (ALS) this year, up from nearly 33,000 in 2022, according to recent projections. ALS, also known as Lou Gehrig’s disease, attacks nerve cells that control voluntary muscle movement, leaving patients unable to walk, speak, swallow or breathe. The average life expectancy after diagnosis is roughly three years, and there is currently no cure.
Local families feel the impact
Jennifer Robb, a resident of Missouri, illustrates the disease’s rapid progression. Within two years, ALS has taken her ability to walk and eat solid foods, and she now relies on a text‑to‑speech device to communicate. Her husband, Eric, left his teaching job to become her full‑time caregiver, noting that daily routines have become dramatically more demanding.
Researchers seek better data
University of Michigan neurologist Dr. Stephen Goutman, director of the university’s ALS clinic, cares for more than 1,000 patients and oversees a clinic that follows nearly 300 individuals at any given time. Together with fellow researcher Ben Murdock, he has spent over a decade studying ALS, including regular blood testing of patients.
Goutman and Murdock say that identifying where patients live and work could help pinpoint environmental risk factors. Studies have suggested a higher risk of ALS among people exposed to certain metals, though the reasons remain unclear. Better geographic data could allow researchers to investigate whether patterns of exposure correlate with disease clusters.
Reporting gaps hinder research
ALS is not a nationally mandated reportable disease, and the CDC’s ALS registry relies on voluntary patient submissions, which the agency admits misses many cases. Eight states—Massachusetts, Vermont, Maine, California, Louisiana, New York, New Jersey and Michigan—have adopted mandatory reporting requirements. Michigan added the requirement in 2025, but more than a year later the state had not collected a single reported case. The state health department declined an interview request, stating it plans to begin statewide collection after a pilot reporting system at the University of Michigan is tested and operational.
Researchers argue that a statewide database could reveal geographic patterns and potential environmental risk factors, helping to focus future studies and funding.
Funding and treatment outlook
Congress approved a record $315 million for ALS research in early 2026, though advocates say additional investment is needed. For comparison, federal funding for cancer research reached $8.1 billion, Alzheimer’s disease $3.9 billion, and HIV/AIDS $3.3 billion.
Current treatment options remain limited. Riluzole, approved more than three decades ago, can extend life by an average of two to three months. Researchers hope to develop therapies that extend survival by six months to a year, with the ultimate goal of finding a cure.
Hope for families
For families like the Robbs, mandatory reporting could increase awareness, boost research funding, and improve support services. “You have to have hope,” Jennifer says, continuing her advocacy for better data collection and greater attention to ALS.
Original reporting: WOWO News/Talk (Fort Wayne) — read the source article.
