Organized and incorporated in the state of Virginia on February 4, 1993, PRISMS, Inc, is governed by a Board of Directors. Most board members have children with Smith-Magenis Syndrome. Board members serve three-year terms and may serve additional consecutive terms. Several members of the Board of Directors also serve as corporate officers. These individuals are responsible for directing the organization’s operations and serving the members. In addition, PRISMS works closely with a multidisciplinary Professional Advisory Board that provides medical guidance and reviews research proposals.
On May 4, 2000, the IRS declared PRISMS a 501c(3) non-profit organization. Our Federal Tax Identification Number is 54-1652029. We file an IRS form 990 every year. This form is available for public inspection at GuideStar.org or upon request.
PRISMS 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.
PRISMS is the leader of the worldwide Smith-Magenis Syndrome community and engages, inspires, and empowers families, physicians, educators, researchers, and others so they can support and improve the lives of everyone affected by SMS.
Compassionate – We are a compassionate organization that cares deeply about the well-being and the needs of each and every individual within the SMS community.
Empowering – We empower families with the knowledge they need to make the best decisions for their family’s needs.
Conscientious – We are conscientious in ensuring that all of our actions and practices serve the needs of the SMS community.
Inclusive – We encourage and seek participation from all those interested in advocating for and creating a positive impact for the SMS community.
Excellence – We focus on quality, conducting our work to the highest ethical and professional standards, and striving for excellence in all that we do.
- Be a global organization
- Be the “go to knowledge center” for all things SMS
- Ensure that all actions taken by PRISMS are grounded in the best available knowledge
- Ensure that those impacted by SMS have the resources and opportunity to achieve their fullest potential
- Be a sustainable organization
Quick Facts About SMS
Smith-Magenis Syndrome is a rare (between 1 in 15,000 to 25,000) neurodevelopment disorder characterized by the following:
- A well-defined pattern of craniofacial and skeletal anomalies
- Expressive speech/language delay
- Middle ear dysfunction
- Sleep-wake abnormalities
- Elevated daytime melatonin
- Cognitive impairment with behavioral and psychiatric symptoms
Most SMS cases are due to a common 3.7 Mb interstitial deletion of chromosome 17p11.2 that includes the retinoic acid induced 1 (RAI1) gene. However, about 10% of cases without deletion result from a heterozygous de novo mutation within the RAI1 gene.
- Common behavioral problems for affecting those with SMS:
- Hyperactivity and attention problems
- Mood lability
- Explosive outbursts/tantrums (often due to changes in routine)
- Other maladaptive, autistic-like and self-injurious behaviors