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A Gift to
PRISMS
. . . can be a living tribute in honor
of a special person or occasion or
in memory of a loved one.
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The PRISMS Mission
PRISMS 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.
Understanding
the Puzzle of
PRISMS is also committed to the support
and promotion of research into the causes,
optimal management and treatment of SMS.
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Smith-Magenis
Syndrome
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• A total communication approach (sign
language, pictures, verbal repetition)
• Early intervention therapies (speech,
physical and occupational therapies,
and sensory integration)
• Special education
My gift is (please choose one—optional):
In honor of:
• Developmental/medical team approach
• Creative behavior strategies
• Medication therapy
On the occasion of:
In memory of:
Please send an acknowledgement card to:
PRISMS is a 501c(3) non-profit organization.
Donations are tax deductible to the extent of the law.
As a volunteer organization, PRISMS'
services and operations are entirely
dependent on the generosity of
individuals. Please assist PRISMS by
making a tax-deductible donation.
PRISMS is a 501c(3) non-profit
organization. Our US federal tax
identification number
is 54-1652029.
P.R.I.S.M.S., Inc.
21800 Town Center Plaza
Suite 266A-633
Sterling, VA 20164
www.prisms.org
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coping with Smith-Magenis Syndrome
Mastercard and Visa are also accepted:
Providing support for individuals and families
Please make checks payable to PRISMS, Inc.
Individuals with SMS have been known to
benefit from some of the following
interventions:
Parents and Researchers Interested in Smith-Magenis Syndrome
www.prisms.org
Syndrome (SMS)?
Perhaps you have just learned about
Smith-Magenis Syndrome (SMS). This
brochure will be a starting point in
understanding all that is puzzling about
this complex genetic condition.
25
SMS is rare. It is estimated to occur in
one of every 25,000 births. Although the
number of known individuals with SMS
has grown in the last six years from
fewer than 200 to over 500, this
syndrome is still vastly underdiagnosed.
Improvements in molecular cytogenenic
techniques and increased public and
professional awareness are vital to
timely and accurate diagnosis.
Common Features
A specific pattern of physical, developmental and
behavioral characteristics has been found in
individuals with SMS. Common features include:
• Characteristic, yet subtle, facial appearance
• Infant feeding problems
• Low muscle tone
• Developmental delay
• Sleep disturbance
• Self-injurious behaviors
A Network
of Support
PRISMS, an acronym for Parents and
Researchers Interested in Smith-Magenis
Syndrome (SMS), was organized in 1992.
PRISMS is a support organization for
families and professionals involved in the
care of people with SMS. The name, like a
prism, reflects the goals and functions of
this international support group. Through a
prism, the spectrum of light is revealed;
through PRISMS, knowledge, questions, and
common concerns about SMS are shared.
• Telephone and e-mail support,
(PRISMS’ e-mail address:
[email protected])
• Website: www.prisms.org
• Database of registered families
• Explosive outbursts
• Official newsletter, Spectrum
• Speech/language delay
• Arm hugging/hand squeezing
• Information packets for families,
caregivers and medical
professionals
• Decreased sensitivity to pain
• Parent-to-parent network
Caring Individuals
• Educational conferences on SMS
Individuals with SMS have much untapped
potential. Positive traits include:
• Engaging personality
• Expressive and affectionate towards adults
• Great sense of humor
• Excellent memory
• Sensitivity to others
• Eagerness to please
on the reverse side, tear off this
PRISMS serves as an international
clearinghouse of information about SMS,
providing a range of educational and support
services, including:
• Prolonged tantrums
• Ear infections
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HERE
Smith-Magenis
CHROMOSOME 17
Smith-Magenis Syndrome
is a clinically recognizable
13
chromosome microdeletion
12
syndrome. It is caused by a
Region
missing piece (deletion) of
deleted
11.2
in SMS
part of number 17
11.1/11.1
chromosome (del 17p11.2).
11.2
12
SMS was first described in
21.1 21.2
the early 1980s by Ann C.M.
21.3
Smith, M.A., D. Sc. (hon),
a genetic counselor and
22
Ellen Magenis, M.D.,
23
a cytogeneticist.
24
TEAR
What Is
SMI TH- MAG E NI S SY N DROME
• Professional Advisory Board;
members serve as a resource to
families and professionals
panel, enclose in an envelope
and mail to:
, INC.
21800 Town Center Plaza
Suite 266A-633
Sterling, VA 20164