A candid conversation with my neurologist at the Cleveland Clinic
My doctor's perspective as co-director of an HDSA Center of Excellence
One of the most common questions I hear as someone living with Huntington’s disease (HD) is, “Where do you get your medical care?” I always smile and say, “At the Huntington’s Disease Society of America Center of Excellence at the Cleveland Clinic,” because I’m genuinely grateful to be under the care of Adam Margolius, MD. He is, without a doubt, the best doctor I’ve had throughout my Huntington’s journey.
Margolius is a neurologist and movement disorder specialist, as well as the co-director of the HDSA Center of Excellence at the Cleveland Clinic in Ohio. He earned his undergraduate degree from Brown University and his medical degree from Case Western Reserve University. I recently sat down with him not as a patient, but as an interviewer eager to give the Huntington’s community a glimpse of the compassionate professional behind the white coat.
Excerpts from our conversation follow.
TA: What inspired you to specialize in movement disorders, and what drew you to working with the Huntington’s disease community?
AM: I’ve always been fascinated by the brain and how it works. Movement disorders are deeply human conditions that affect how people move, speak, think, and relate to others. HD, in particular, caught my attention because it impacts motor, cognitive, and emotional domains.
How has your understanding of Huntington’s disease evolved over the years?
I’ve learned that no two HD patients are alike. Even within the same family, symptoms can vary dramatically. That diversity taught me to approach each person with curiosity and humility. HD care is a lifelong learning process.
What do you believe are the most important qualities a neurologist should embody when working with Huntington’s families?
Listening — really listening — is key. It’s not just about what the exam shows but how HD impacts someone’s life. Compassion and empathy are also essential. Patients are trusting us with very vulnerable parts of their lives, and we must meet them with presence and respect.
What makes the Cleveland Clinic’s HDSA Center of Excellence unique in your eyes?
Our model is team-based. In addition to neurology, patients have access to psychiatry, psychology, genetic counseling, social work, and more. This holistic, collaborative approach makes a profound difference.
What advancements in Huntington’s research or treatment excite you the most right now?
Gene-targeted therapies, especially DNA- and RNA-based treatments like gene silencing. These hold real promise for changing the course of HD at a molecular level. It’s an evolving area, and while we’re not there yet, progress is happening.
What are your thoughts on the stigma around Huntington’s, especially when symptoms aren’t visible?
Stigma is very real and often invisible. It’s why empathy matters so much. What’s visible externally doesn’t always match what a person is living through internally.
How can the medical field do better at diagnosing Huntington’s earlier, especially in underrepresented populations?
Education is critical. There’s a dangerous misconception that HD only affects certain ethnic groups. Providers must be trained to recognize HD across all populations and approach every case without bias.
What advice would you give clinicians who are new to Huntington’s care?
Be humble. Be observant. Listen more than you speak. Let the patient teach you who they are.
After a diagnosis, what do patients need most from their medical team?
Reassurance that they’re not alone. An HD diagnosis is life-changing. Patients need to know they have a team behind them, ready to answer questions and walk with them every step of the way.
What keeps you hopeful in your work, especially during the tough moments?
My patients. Their strength, humor, and love for their families inspire me every day. Their resilience keeps me going.
What do you wish every person diagnosed with Huntington’s could hear on day one?
You are not alone. You have a team that will support you through this journey. We’re here with you.
How do you envision the future of Huntington’s care in the next decade?
I hope we find a cure. But even before that, I believe we’ll see treatments that significantly slow the disease’s progression and improve quality of life.
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Interviewing Margolius reminded me how fortunate I am to have a neurologist who sees me — not just as a patient, but as a person. If you’re navigating Huntington’s disease, know that compassionate, knowledgeable care is out there. And it begins with a doctor who listens, leads with empathy, and believes in the power of hope.
If you’re looking for support, reach out to your local HDSA Center of Excellence or visit the HDSA’s website to find resources near you. You are not alone.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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