Amyotrophic Lateral Sclerosis, more commonly known as ALS, is a disease that many have heard of, but few fully understand. This progressive neurodegenerative disease affects nerve cells in the brain and spinal cord and over time, leads to loss of muscle control, impacting movement, speech, eating, and eventually breathing. According to the ALS Association (www.als.org), “ALS is always fatal, usually within 2 to 5 years of diagnosis.” While some individuals live longer, there is currently no cure. Hence their motto, “Let’s Accelerate the Cure. ALS moves fast. You can move science faster.”
Diagnosis of ALS is not simple and there is no single test that can confirm a positive result. Instead, ALS is identified through a combination of clinical evaluations, neurological exams, and ruling out other conditions. This process can take time, adding emotional strain and growing symptoms to an already difficult reality.
We have seen ALS in the news more recently, as public figures like actors A. Russell Andrew and Eric Dane have shared their diagnosis. Singer Roberta Flack, famously known for her song “Killing Me Softly With His Song,” passed away in February 2025 from ALS. And just this week 90 Day Fiancé star Jenny Slatten shared they too have been diagnosed with ALS. Why does this matter? When celebrities speak openly, it brings visibility, and it also reminds us that ALS does not discriminate. This disease doesn’t decipher whether you are rich or poor, famous or not, and it can sneak into the lives of even the more unassuming people, because illness isn’t a repercussion of character, lifestyle, or merit. No one deserves ALS or any illness.
Is ALS on the rise? The research continues and some data suggests a gradual increase in diagnosed cases, potentially due to better awareness and improved diagnostic tools. But ALS remains a rare disease, affecting approximately 2 out of every 100,000 people each year.
For those diagnosed, support is everything. Here in Vermont, resources may feel limited due to geography, but connection still exists. Organizations like the ALS Association provide guidance, equipment support, and care coordination. Locally, healthcare providers, community organizations, and support networks work together to ensure individuals and families are not navigating this alone. The University of Vermont Health Care Center offers the only full-service ALS clinic in Vermont, and the ALS Association recognizes this clinic as a Certified Treatment Center of Excellence, reflecting high standards of care which is another big win for ALS patients in our area. ALS impacts not just the individual, but entire families and communities, making caregiving, emotional support, and access to services critical components of daily life. ALS isn’t something that someone can navigate alone.
Awareness months like this are not just about information, they are about compassion. They are about understanding the realities behind the diagnosis and recognizing the resilience of those living with it. According to the Mayo Clinic (www.mayoclinic.org), “ALS often begins with muscle twitching and weakness in a limb… eventually affecting control of the muscles needed to move, speak, eat and breathe.” That progression is why early support and continued care matter so deeply. We may not have a cure yet, but we do have the ability to support, advocate, and stand beside those affected. Awareness leads to understanding. Understanding leads to compassion. And compassion is where real support begins. Isn’t that the Vermont way? Here in the NEK, we have proven repeatedly that we are people who believe in community, resiliency and are working towards a better future for everyone.
ALS needs a better future; it needs a cure. Through awareness and initiatives there is the opportunity to do more research, learn from patients, grow study programs, learn from therapeutic practices, and see how advances in pharmaceuticals can change the landscape for ALS. Did you know that ALS advocates work to share this information with our legislators about the critical needs of people living with ALS, their families, and caregivers in Vermont? By visiting: https://www.als.org/vermont-state-advocacy you can become an ALS advocate too! Helping to advance legislation, create and improve policies, and change laws to help the thousands of people living with ALS here in our home.
Right now, the ALS Foundation estimates that 35 Vermonters are living with ALS, however the ALS Association in Vermont is serving forty-nine people living with ALS. 83.7% of these people live in the rural areas of Vermont. The average months from diagnosis to loss of life is 39.4 months for our community members. Vermont NIH Research Funding in 20 18 brough in $89,091,351 overall and spent just $546,000 on ALS projects. This impact is a ripple effect from the 35-49 Vermonters living with ALS, (That is likely increasing), to the ones caring for them, the doctors serving them and the communities that grieve them. This is a disease that needs support now. Let’s start the way we all can, the Vermont way with compassion, compassion is where real support begins.