imgMission1PRISMS, 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.



Organized and incorporated in the state of Virginia on February 4, 1993, PRISMS, Inc, is governed by a 11 member 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.

Mission

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.

Vision

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.

Values

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.

Goals

  1. Be a global organization
  2. Be the "go to knowledge center" for all things SMS
  3. Ensure that all actions taken by PRISMS are grounded in the best available knowledge
  4. Ensure that those impacted by SMS have the resources and opportunity to achieve their fullest potential
  5. Be a sustainable organization

Objectives (prioritized) with activities

  1. Be a global organization
    1. Create a registry to capture and store information on SMS individuals worldwide
    2. Create a network of international partner organizations
    3. Expand international representation on PRISMS Professional Advisory Board
    4. Expand and modify programs and materials to better serve an international community of families
    5. Create a directory of research and treatment professionals
    6. Develop global feedback mechanism for Board of Directors from international communities
  2. Be the "go to knowledge center" for all things SMS
    1. Expand Regional Representative Program so as to assist with the awareness and accessing of local resources
    2. Communicate information about the latest research to families in understandable language
    3. Share information about SMS with physicians and other professionals (e.g. special needs educators, trust planners, attorneys, genetic counselors, etc.) and their offices
    4. Create a network of known educators and therapists who work with SMS individuals to connect them with each other as a means of support
    5. Provide guidance to parents in advocating for their child
  3. Ensure that all actions taken by PRISMS are grounded in the best available knowledge
    1. Ensure regular communication between PRISMS and its Professional Advisory Board
    2. Establish a review process to ensure content and materials are up-to-date and are based on consensus and evidence-based research
    3. Establish a procedure with the PAB for identifying and soliciting and evaluating research opportunities
    4. Grow basic science, clinical and educational research funding
    5. Expand and extend the areas of expertise represented in the Professional Advisory Board
    6. Expand the number of researchers investigating aspects of SMS
  4. Ensure that those impacted by SMS have the resources and opportunity to achieve their fullest potential
    1. Develop and improve PRISMS informational content for all stages of life from infancy to old age
    2. Develop the Regional Representative program into an established network of parent and family representatives equipped to host events and support families in their local regions around the world
  5. Be a sustainable organization
    1. Develop a comprehensive and detailed annual funding plan and provide regular updates at Board meetings
    2. Clarify the meaning and value of the PRISMS membership program and adjust communications with members to reflect and strengthen this relationship
    3. Update PRISMS financial systems to more accurately reflect annual activities and to be more useful when analyzing income and expenses
    4. Develop an internal succession and recruitment plan for board members and volunteers serving on committees
    5. Executive Committee is tasked with ongoing review and development of Board meetings, committees and the procedures and materials needed for an engaged Board of Directors
    6. Ensure PRISMS identifies and implements best practices in all its programs and operations