Dystonia is a neurological disorder characterized by uncontrollable, involuntary muscle contractions that result in repetitive movements, twitching, twisting or abnormal postures and poses. Dystonia can appear in children and adults, and affects an estimated 500,000 people in North America.

Different forms of the disease can affect the face, neck, throat, eyelids, arms, legs or torso. Forms of dystonia include writer’s cramp, cervical dystonia (spasmodic torticollis), laryngeal dystonia (dysphonia), facial dystonia (oromandibulardystonia), excessive blinking (blepharospasm), and Meige syndrome, also known as oral facial dystonia.

Diagnosis and treatment
A movement disorder neurologist usually diagnoses and treats dystonia. Today, a range of treatments are possible, depending on the location and severity of the symptoms. These treatments range from oral medications, injections of botulinum toxin, to deep brain stimulation surgery.

Finding a cure
Research is currently underway to identify the genes that cause dystonia and there have been many breakthrough discoveries in recent years. It is expected that this research will lead to better genetic testing, counseling and treatment.

Bachmann-Strauss Dystonia Center of Excellence
The Alan and Barbara Mirken Department of Neurology at Beth Israel Medical Center is the nation’s first Bachmann-Strauss Dystonia Center of Excellence. This distinction of excellence is a result of our compassionate patient care, quality clinical expertise and research.

The Bachmann-Strauss Dystonia& Parkinson Foundation is an independent, nonprofit organization, established in 1995, to find better treatments and cures for movement disorders, dystonia and Parkinson’s disease, and to provide medical and patient information.

Comprehensive, coordinated approach
Obtaining a proper diagnosis and finding access to treatment and care has long been missing for people with dystonia. This multidisciplinary center is the first of its kind for dystonia. It brings together neurologists, surgeons, psychiatrists, genetic counselors and others, as needed, to confer about a patient’s diagnosis and to develop a comprehensive, coordinated treatment plan. Our range of clinical services includes:

• Medical and/or surgical treatments
• Speech therapy
• Physical/occupational therapy
• Psychiatric care/therapy
• Support groups
• Movement classes
• Research studies
• Genetic testing

In addition to providing top-notch clinical care and support services, our Center includes an onsite genetic research component to explore the causes of dystonia and help move the science forward.

It also features a training program to enable Fellows (physicians pursuing advanced, specialized training), to acquire clinical and research skills in the field of dystonia. This process helps us to develop the next generation of experts.

Center Staff
Susan Bressman, MD
Chair of the Alan and Barbara Mirken Department Neurology and Division Chief

Rachel Saunders-Pullman, MD
Attending Neurologist

Lawrence Severt, MD, PhD
Attending Neurologist

Vicki Shanker, MD
Attending Neurologist

Naomi Lubarr, MD
Attending Neurologist/Pediatric Neurologist

Mark Groves, MD
Attending Psychiatrist

Christina Palmese, PhD
Neuro-psychologist

Joan Miravite, RN, FNP-BC
Nurse Practitioner

Deborah Raymond, CGC
Genetic Counselor

Jeannie Soto-Valencia, BA
Coordinator of Academic Affairs

Kaili Stanley, BS
Research Associate

Sara Lewis, MPH
Clinical Trials Manager

Akhila Iyer, BA
Project Research Assistant

For more information:
Joan Miravite, NP
(212) 844-6134
jmiravite@chpnet.org