New Advancements in ALS Care: Treatments, Therapies, and Ongoing Research
New Advancements in ALS Care: Treatments, Therapies, and Ongoing Research
Amyotrophic lateral sclerosis (ALS) first garnered widespread attention in 1939, when New York Yankees baseball player Lou Gehrig was diagnosed with the neurogenerative disease. Over the decades, social media campaigns, such as the 2014 Ice Bucket Challenge, and other high-profile cases—including actor Eric Dane, who died less than a year after announcing his diagnosis—have brought ALS back into the public conversation.
According to the Centers for Disease Control and Prevention (CDC), about 30,000 people in the United States are living with ALS. Even though it’s a rare disease, it’s a life-changing and devastating diagnosis to receive.
What an ALS Diagnosis Means
ALS is a serious disease that affects the nerves that send messages from the brain to the muscles so we can move, talk, swallow, and breathe.
“When ALS causes these nerves to slowly stop working and die, the muscles become weak and smaller over time,” says Cassie Kuhn, DNP, APRN, a nurse practitioner who specializes in neuromuscular disorders at University of Utah Health. “People with ALS may have trouble walking, using their hands, speaking, swallowing, and eventually breathing.”
ALS is a progressive disease, meaning it worsens over time. Symptoms vary from person to person and may be mild at the beginning.
Early symptoms of ALS include:
- Muscle weakness in the arms or legs
- Tripping or falling more often
- Trouble holding things or using the hands
- Slurred or slow speech
- Difficulty swallowing
- Muscle cramps or twitching
Cognitive function is affected in about 35–50% of patients, and about 15% eventually develop frontotemporal dementia. ALS does not affect sight, touch, taste, hearing, or smell.
Because early symptoms resemble those of other conditions, diagnosis often involves multiple tests, including:
- Neurological exams
- Electrodiagnostic tests
- Blood tests
- Genetic tests
Living with ALS
The ALS Foundation reports that the average life expectancy after symptom onset is about two to five years.
“There is no cure for ALS yet, but treatments can help people live more comfortably and keep their independence as long as possible,” Kuhn says.
Common ALS treatments at University of Utah Health include:
- Medications that may slow the progression of the disease or manage symptoms
- Physical or occupational therapies to support mobility and daily activities like dressing or eating
- Speech therapy for communication and safe swallowing
- Breathing support as respiratory muscles weaken
- Nutrition support to ensure patients are eating enough
Multidisciplinary Care at U of U Health’s ALS Clinic
The Motor Neuron Disease/ALS Clinic at University of Utah Health is the only multidisciplinary ALS clinic in the Mountain West region. It supports ALS patients and their caregivers to help manage symptoms and improve quality of life.
“At U of U Health’s ALS Clinic, patients see several specialists in one place—it’s a one-stop shop,” Kuhn says. “The team works together to create a care plan that fits each patient’s needs and allows patients to be seen at one longer appointment rather than several different appointments, which is important because of physical challenges with the disease.”
Specialists on the ALS care team include:
- Neurologists
- Physical therapists
- Occupational therapists
- Speech therapists
- Respiratory therapists
- Dietitians
- Genetic counselors
- Social workers
- Case managers
- Pulmonologists
The clinic also offers a new gene therapy infusion for patients whose ALS is caused by proven genetic mutations—about 20% of cases. This treatment involves a series of injections into the spine.
Research and Hope for the Future
University of Utah Health is actively involved in many clinical trials and research funding efforts, with the goal of providing hope for future treatments and cures. One such trial is the HEALEY ALS Platform Trial, which is being conducted at 80 sites across the U.S. to test multiple study drugs at once, decreasing the time it takes to find potentially groundbreaking therapies.
The clinic also participates in the All-ALS Consortium, which collects biomarkers to better understand the progression of the disease.
Through these clinical trials, research partnerships, and community fundraising, the ALS Clinic continues to support patients while helping to advance ALS advocacy and care.
Clinical Neurosciences Center
The flagship neurology and neurosurgery center at U of U Health offers care from the top specialists in brain, nerve, and spine treatment.
