By: Grace Huff
This post is dedicated to ALS Awareness Month, a time to honor the strength of those living with ALS and to recognize the critical work being done to improve care and accelerate research. By spotlighting this complex disease, we aim to foster greater understanding, reduce stigma, and encourage continued support for innovative care models and clinical trials shaping the future of ALS treatment.
A United Front Against ALS:
At the Norman Fixel Institute for Neurological Diseases at UF Health, care for patients with amyotrophic lateral sclerosis (ALS) goes far beyond symptom management. Through a collaborative, multidisciplinary model and access to leading clinical trials, the institute is redefining comprehensive, patient-centered care for individuals facing one of the most challenging neurodegenerative diseases.
ALS, often known as Lou Gehrig’s disease, is a progressive condition that affects the nerve cells in the brain, brain stem, and spinal cord that control voluntary muscles. Over time, these motor neurons deteriorate, leading to muscle weakness, loss of movement, and eventually difficulty breathing. Affecting roughly 5 out of every 100,000 people globally, the disease remains incurable, but institutions like Fixel are making strides in improving quality of life and expanding treatment options.
One Team, One Goal: Better Quality of Life
What makes Fixel’s approach to ALS care unique is its integrated care model. During quarterly clinic visits, patients meet with a full team of specialists, including neurologists, physical and occupational therapists, speech-language pathologists, respiratory therapists, dietitians, social workers, and neuropsychologists, all in one setting. “This approach streamlines care, reduces the burden of multiple appointments, and ensures that every aspect of the patient’s health, comfort, and quality of life is addressed,” said Whitney McNeely, APRN. This model eliminates the burden of coordinating multiple appointments and ensures that every facet of a patient’s well-being is addressed. “Our team is focused on bringing newer, advanced therapies to patients and fighting this disease,” said McNeely.
“We are truly a team in every sense of the word,” said James Wymer, MD, “when a patient walks in the door, they’re surrounded by professionals who understand not only the science of ALS, but the human experience behind it. We work together to support the patient’s function, independence, and comfort every step of the way.”
Beyond physical care, the institute offers extensive emotional and educational support for caregivers and families, empowering them with the resources and guidance they need to navigate the ALS journey with strength and confidence.
Hope Through Innovation: The Role of Clinical Trials
In addition to clinical care, Fixel gives patients access to innovative clinical trials that explore promising therapies before they become widely available. These trials are a vital part of the institute’s mission to advance ALS research while offering patients more hope for the future.
One such trial, A2AR and Breathing in ALS, is currently investigating how a medication called istradefylline, combined with controlled exposure to low-oxygen air (known as acute intermittent hypoxia, or AIH), might impact respiratory function in ALS patients. This study reflects UF Health’s commitment to translating scientific discovery into meaningful change for patients.
“Clinical trials offer more than experimental treatment, they offer opportunity,” said Wymer, “patients feel empowered knowing they’re helping to shape the future of ALS care.”
Beyond the Clinic: Ongoing, Personalized Support
Follow-up care at Fixel is consistent and tailored to each patient’s evolving needs. Between visits, patients and families have access to services like equipment consultations, home health referrals, nutritional counseling, and respiratory support. Care coordination ensures no patient feels alone, and caregiver support programs strengthen the network around each family.
As ALS Awareness Month brings national attention to this devastating disease, the Fixel Institute stands as a beacon of hope. Its model of coordinated, compassionate care—paired with pioneering research—offers a path forward for patients and families facing ALS.
Interested in participating in a clinical trial?
Learn more at UF Health Clinical Trials or explore opportunities like the A2AR and Breathing in ALS study.