P.R.I.S.M.S., Inc.
Cause Area
- Children & Youth
- Community
- Health & Medicine
- People with Disabilities
Location
21800 TOWN CENTER PL STE 266A-633STERLING, VA 20164 United StatesOrganization Information
Mission Statement
PRISMS, an acronym for 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 to increase awareness and understanding of SMS.
Smith-Magenis syndrome (or SMS) is a chromosomal disorder characterized by a recognizable pattern of physical, behavioral, and developmental features. It is caused by a missing piece of genetic material from chromosome 17, referred to as deletion 17p11.2.
Common features include: characteristic, yet subtle, facial appearance, infant feeding problems, low muscle tone, developmental delay, variable levels of intellectual disability, early speech/language delay, middle ear problems, skeletal anomalies and decreased sensitivity to pain. The syndrome also includes a distinct pattern of neurobehavioral features characterized by chronic sleep disturbances, arm hugging/hand squeezing, hyperactivity and attention problems, prolonged tantrums, sudden mood changes and/or explosive outbursts and self-injurious behaviors.
Description
PRISMS serves as a central clearinghouse for information about SMS, providing a range of educational and support services, including:
- Telephone and email support
- Database of registered families
- Official newsletter - Spectrum
- Information packet for newly diagnosed families, PRISMS brochure and video
- Parent-to-Parent Program
- International conferences on SMS every 2-3 years