Smith-Magenis Syndrome

Smith-Magenis Syndrome (SMS) is a rare neurobehavioral disorder characterized by a recognizable pattern of physical, behavioral, and developmental features. It is caused by particular genetic changes on chromosomal region 17p11.2, which contains the gene RAI1. 

SMS occurs in between 1 out of every 15,000 to 25,000 births. Common features include: developmental delay, sleep disturbance, self-injurious behaviors, prolonged tantrums, explosive outbursts, speech/language delay, ear infections, arm hugging/hand squeezing, characteristic, yet subtle, facial appearance, infant feeding problems, low muscle tone, and decreased sensitivity to pain.

There are no medications that can “cure” SMS or eliminate the core symptoms. However, there are medications that can help some people with SMS function better. For example, medication might help manage high energy levels, inability to focus, sleep, or seizures. 

Continued research for SMS depend on donations and gifts from people like you. If you are interested in supporting this organization, click below. 

PRISMS, Parents and Researchers Interested in Smith-Magenis Syndrome, is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals.