Johns Hopkins Stiff Person Syndrome Center

The Johns Hopkins Stiff Person Syndrome (SPS) Center, led by Dr. Scott Newsome, offers patient education, symptom management and hope for the future for people with this rare disorder. Our multi-specialty team includes experts in neurology, immunology, ophthalmology, neuromuscular disease and related fields. With access to one of the largest databases of SPS biomarkers, our team works to advance our understanding of this disease and leads the way toward more effective treatments.

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Team | ApproachResearch | Videos | Patient Info | Patient Resources | Donate

About Stiff Person Syndrome

Stiff person syndrome is a rare disease affecting only one or two people per million. It commonly causes muscle stiffness and painful spasms that worsen over time. They can be triggered by a variety of things including sudden movement, cold temperature or unexpected loud noises.

Learn more about stiff person syndrome

Why Choose Johns Hopkins SPS Center

Research-Based Approach

Our center sees more people with SPS than other centers around the world. We maintain a huge database of clinical findings and outcomes that offer valuable insights we apply to patient care.

Tailored Treatments

SPS can cause a range of symptoms that vary from person to person. Our team assesses every aspect of life and well-being affected by this condition and develops a treatment plan tailored to you.

Multi-Specialty Care

Experts in autoimmune neurological disorders, neuro-ophthalmology, movement disorders and neuropsychology work together to offer you the best care.

Patient Stories

Gay's Story

Gay was experiencing debilitating stiffness and spasms in her legs. Trying to solve the mystery of her symptoms, she learned about stiff person syndrome, a very rare disease with symptoms that matched hers.

Gay headshot

Ruth's Story

After unexplained muscle spasms and stiffness knocked her down for two years, Ruth found the care and treatment she needed at Johns Hopkins.

A photo of patient Ruth Carroll being supported by her doctor and another man.


Lisa Fox, PA-C

Physician Assistant

portrait of Lisa Fox

Sarah Snoops, R.N.

Registered Nurse

Sarah Snoops headshot

SPS Educational Videos

Stiff Person Syndrome - Differential Diagnosis

Management of Stiff Person Syndrome

Stiff Person Syndrome, Stress, and Cancer

For Physicians: Stiff Person Syndrome Spectrum Disorders

Dr. Newsome discusses the prevalence and presentation of stiff person syndrome and the expanding clinical spectrum. He also shares an overview of diagnostic assessment and treatment options for these conditions.

SPS Research

An Extensive Stiff Person Syndrome Database

The center’s repository of SPS biomarkers and other patient data is among the world’s largest, providing rare insight into mechanisms of disease, criteria for accurate diagnosis and promising therapies.

Through long-term tracking of people with SPS, our team is gaining a better understanding of how SPS impacts people, and how to treat each person with the best possible outcomes in mind.

  • Some of our main research goals include:
  • Defining the full clinical spectrum of SPS (helps promote awareness)
  • Identifying biomarkers of disease burden and pathogenesis (potential cause of SPS and response to treatment)
  • Developing/finding better ways to treat SPS.

Patients of our center can be part of this research. There is little to no time commitment outside of your regularly scheduled visits.

SPS Research Papers

Our team has written numerous research papers on a variety of topics related to stiff person syndrome.

View on PubMed

Patient Information

This is information is also available in the PDF form:

SPS information for new patients

SPS information for follow-up appointments

Support Our Center

You can support our research and patient care by making a donation to our center. Please designate your gift to the Stiff Person Syndrome Center or to Dr. Newsome when filling out the form.

Patient Resources