Do Fun Stuff Vol. 1 is the first of what will become a yearly compilation of original kids music curated by Ryan Marshall who writes the blog Pacing the Panic Room.
The idea to create a kids record was inspired by his step-son’s love of music, who was diagnosed with Smith Magenis Syndrome in late 2009. Upon first learning of this diagnosis there was virtually no information easily available to inform the family of what was to be expected or how to manage SMS. After Marshall’s wife received a phone call at her work by the developmental pediatrician who ordered the test, the short clinical explanation delivered over the phone offered no comfort, or much useful information. It was apparent the Doctor was reading a descriptor out of a book, and just said that she should take her son to see a Geneticist for more info. Cole Marshall turned to the internet and found the website PRISMS which provided the first real glimpse into the complexities and challenges ahead.
100% of the proceeds from the sale of Do Fun Stuff will go into a grant fund established by PRISMS and the money made available to grad students who select Smith Magenis Syndrome as their field of choice. This is in the hopes of generating more intense case studies to provide parents, and researchers with new and important information about the mysteries of Smith Magenis Syndrome.
Common features include: characteristic, yet subtle, facial appearance, infant feeding problems, low muscle tone, developmental delay, variable levels of mental retardation, 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.
Ann C.M. Smith, M.A., D.Sc. (hon) a genetic counselor, and Dr. R. Ellen Magenis, a physician and chromosome expert, described the first group of children with this deletion in the 1980's. Most people with the diagnosis have been identified since 1995 as a result of improved laboratory techniques that allow the accurate detection of this chromosomal deletion. Although the exact incidence is not known, it is estimated that SMS occurs in 1 out of 25,000 births. SMS is under-diagnosed, but as awareness of it increases, the number of people identified grows every year.
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) 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 8 member Board of Directors. Most board members have children with Smith-Magenis syndrome. Board members serve three-year terms and may service 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. Ann C.M. Smith, the co-discoverer of w, serves on the PRISMS Board of Directors and is also the head of the Professional Advisory Board.
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.
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