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

The simple act of getting Jennifer Robb out of bed now takes two hours. Just two years ago, a diagnosis of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, began to steal her abilities, first her ability to walk, then to eat solid foods, and now, tragically, her voice. As she communicates through a text-to-speech tool, Jennifer’s quiet plea echoes a growing concern across the nation: ALS is on the rise, and the lack of mandatory reporting is hindering efforts to understand why. While there is no cure for this devastating disease that attacks nerve cells in the brain and spinal cord, tracking its spread could hold the key to unlocking answers and ultimately, offering hope.

What Happened: A Rising Tide of ALS Cases

Amyotrophic lateral sclerosis, or ALS, has no cure, and the number of cases is projected to rise. The number of people in the U.S. with the disease is not known because doctors are not required to report cases to their health departments. A growing number of states are making reporting mandatory. ALS affects the nerve cells in the brain and spinal cord. It is considered a rare disease, and experts say there is no explanation for why the numbers are rising. The projected number of cases in 2022 was nearly 33,000, and that number is expected to climb to 35,000 by 2026 – a stark reminder of the growing burden this disease places on individuals and families. According to the ALS Association, a growing number of states are now requiring reporting of ALS cases, including Massachusetts, Vermont, Maine, California, Louisiana, New York, New Jersey and Michigan, which implemented its rule in 2025.

Living with ALS is a daily battle. In two years, ALS has taken Jennifer Robb’s ability to walk and to eat most solid food. It is now taking her ability to talk. Using the text-to-speech tool, Jennifer conveyed it’s a “constant challenge” where “every day gets harder with loss of function.” Her hands are her main source of communication, but Jennifer admitted they are getting weaker. ALS destroys the nerve cells that control voluntary muscle movement. As motor neuron cells die, people lose the ability to walk, talk, swallow and breathe. There is no cure, and the disease is fatal. Her husband, Eric Robb, quit his job as a teacher to become her full-time caregiver, a testament to the profound impact of ALS on families. The average life expectancy after diagnosis remains a heartbreaking three years, leaving patients and their loved ones with a sense of urgency and a desperate need for answers.

The rate of ALS is approximately 1 in every 100,000 people, and in Jennifer’s home county in Missouri, three individuals have been diagnosed – a statistic that would remain hidden were it not for the growing movement toward mandatory reporting. Missouri health leaders would not know this because it is not among the states tracking the disease. “I think it needs to be mandated,” Eric Robb stated, emphasizing the need for awareness and increased funding for research and support services. Jennifer advocates for mandated reporting with ALS groups, believing that increased awareness will lead to greater funding and support for those affected by the disease. “You have to have hope,” she shared, a sentiment that resonates deeply with those facing this challenging diagnosis.

Research and Treatment: A Long Road Ahead

Researchers across the country are tirelessly working to unravel the mysteries of ALS and develop effective treatments. Dr. Stephen Goutman, associate professor of neurology at the University of Michigan and director of its ALS clinic, expressed the hope that their work will ultimately render their efforts obsolete. “We hope to put ourselves out of business. We don’t want to be doing this,” he said. The clinic, which follows close to 300 individuals at any given time, has been instrumental in gathering data and testing potential therapies. He has seen people living with ALS for 14 years and has cared for more than a thousand people with the disease.

However, progress has been slow. While the drug Riluzole remains the “gold standard” treatment, it only extends life expectancy by a few months. “That’s still the gold standard. It provides an extra, I want to say, two or three months of life,” explained Ben Murdock, an associate professor of neurology at the University of Michigan Medical School. Researchers are striving for treatments that offer a more substantial benefit – ideally, at least six months to a year – and ultimately, a cure. The challenge lies in the fact that the underlying causes of ALS remain largely unknown.

One significant avenue of investigation centers on the potential role of environmental pollutants. “Individuals exposed to metals seem to have this higher risk of ALS, and we don’t entirely know why that is, but it’s giving us something to dig into,” Dr. Goutman noted. Mandatory reporting could provide invaluable data on geographic patterns and potential environmental exposures, allowing researchers to identify risk factors and develop targeted prevention strategies. The lack of data from states like Missouri hinders these efforts. Researchers said they could better study that if they knew where ALS patients were located.

Community Reaction: A Call for Awareness and Action

The Robb family’s story is not unique. It represents the silent struggle of thousands of families across the country grappling with the devastating effects of ALS. Jennifer’s experience has fueled her advocacy for mandatory reporting, believing that increased awareness will lead to greater funding and support for those affected by the disease.

The Growing Push for Funding

The recent congressional approval of $315 million for ALS research represents a significant step forward, but advocates emphasize that more funding is crucial. This level of funding pales in comparison to what is allocated for other diseases – $8.1 billion for cancer, $3.9 billion for Alzheimer’s disease, and $3.3 billion for HIV/AIDS – highlighting the disparity in resources dedicated to combating this rare but devastating illness. Increased funding would not only accelerate research into treatments and a cure but also support programs that provide essential services to patients and their families.

What’s Next: Tracking, Research, and Hope

While Michigan’s mandatory reporting rule was enacted, the state has yet to collect a single case due to delays in establishing a pilot collection system at the University of Michigan. The Michigan health department declined interview requests. It said that once a pilot collection system is tested at the University of Michigan and is working properly, it will start collecting data statewide. Goutman and Murdock advocated for the tracking. Murdock said the information will be helpful for studies of environmental exposure.

The CDC maintains a national ALS registry, but its reliance on people self-reporting their disease limits its accuracy. The CDC acknowledges it is missing cases because reporting is not mandatory. Nevertheless, the data gathered through reporting will be invaluable for researchers studying the disease’s geographic distribution, potential risk factors, and the effectiveness of treatments.

Rebecca’s Take: A Community's Responsibility

Watching Jennifer Robb’s story unfold, and learning about the challenges faced by families like hers, really underscores a profound truth: we are all connected. ALS isn’t just a medical mystery; it’s a human tragedy unfolding in our communities. The fact that Missouri doesn’t track these cases, leaving Jennifer and her family feeling ignored, is a stark reminder of the importance of proactive public health measures. It’s easy to feel helpless in the face of such a devastating disease, but there are things we can do. Supporting the ALS Association, advocating for mandatory reporting in our state legislature, and simply raising awareness within our own circles can make a difference. Strong families are the bedrock of a thriving community, and when one family faces such a profound challenge, it’s our responsibility to offer support and advocate for solutions.

The commitment to marriage and family displayed by Eric Robb, sacrificing his career to care for his wife, is a powerful testament to the enduring values that bind us together. While we can't control the challenges life throws our way, we can control our response – choosing to offer love, support, and hope in the face of adversity. Let’s pray for Jennifer, for Eric, and for all those battling ALS, and let’s work together to find answers and ultimately, a cure.

Resources for Those Affected by ALS

For individuals and families affected by ALS, there are several resources available to provide support and information:

• The ALS Association: Provides comprehensive resources, including patient support, advocacy, and research funding.
• ClinicalTrials.gov: A database of clinical trials for ALS and other diseases.
• Centers for Disease Control and Prevention (CDC) - ALS: Offers information on ALS, research, and public health initiatives.
• University of Michigan ALS Clinic: A leading center for ALS research and patient care.
• City of Alpharetta: Connects residents with local support services and resources.
• Fulton County Government: Provides access to county-wide health and human services.
• State of Georgia: Offers information on state-level health programs and resources.
• Muscular Dystrophy Association: Provides support and resources for individuals with neuromuscular diseases, including ALS.
• National Multiple Sclerosis Society: While focused on MS, offers relevant resources and support for individuals with neurological diseases.
• Easterseals: Provides a range of services for individuals with disabilities, including ALS.

It is crucial for those affected by ALS to seek medical attention, connect with support networks, and stay informed about research advancements. The commitment to marriage and family displayed by Eric Robb, sacrificing his career to care for his wife, is a powerful testament to the enduring values that bind us together. While we can't control the challenges life throws our way, we can control our response – choosing to offer love, support, and hope in the face of adversity. The rising rates of ALS serve as a stark reminder of the fragility of life and the importance of community. Let’s commit to supporting those affected by this disease, advocating for research, and working towards a future where ALS is no longer a threat.

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