5p- Brochure - Five P Minus Society

Services Offered
Frequently Asked Questions
Parent-to Parent Support
Family support coordinators are located throughout North
America. Parents are available for emotional, educational
and friendship support.
Is it Genetic?
5p– Syndrome occurs at meiosis (or first cell division after
conception). 90% of the cases are considered “de novo”
or by chance, 10% of the cases occur because of a transfer
from one of the parents. The syndrome is not usually
diagnosed during prenatal testing mainly because most
pregnancies are normal.
5P– News
A perfect spot for parents, siblings and professionals to share
and talk about their special someone with Cri du Chat
Syndrome. Free to members; published 3-4 times a year.
Annual Conference
The Annual Conference and Get Together is held in a
major city of the United States at the end of July. This is
an opportunity to meet other families, network, learn
about current trends regarding therapies, speech and
language advances and consult with medical professionals.
Parent to Parent interaction, Grandparent support, Sibling
support, Research Update, Educational Forums and Family
Group Outings are some of the events held at the annual
conference.
Reseach Support
Members of the 5p– Society are given opportunities
to participate in research on Cri du Chat Syndrome.
Professional Advisory Board approves research requests
prior to distribution.
Online Support
facebook.com/CriduChatSociety
twitter.com/5pminus
instagram/5pminus
youtube.com/5pminussocietyusa
CRI DU CHAT SYNDROME “I CAN” VIDEO
In honor of the 50th anniversary of the diagnosis of Cri du Chat
Syndrome, the 5p- Society has created a video to help families understand
the improved prognosis of the syndrome.
https://www.youtube.com/watch?v=2AEvN0-6M6I
CRY OF THE CAT (DVD)
By Helen McGrath
Cost: $15.00 US (order through 5p– Society)
A 42 minute video produced by a parent of a child
with Cri du Chat Syndrome. The video shows various children with
diff erent degrees of the syndrome. Developmental stages and educational issues
Is he/she deaf? How come he/she is signing and cannot talk?
A child with 5p– Syndrome is not likely to be deaf, they
sign because it is their way of being able to communicate.
Many children with the syndrome cannot talk. Their larynx
is underdeveloped. Some children use augmentive devices
for communication.. The children that can talk may be
unintelligible and therefore still need to use alternative
means of communication.
Can it be cured?
Unfortunately, 5p– Syndrome cannot be cured. A portion
of the 5th chromosome is missing. It cannot be replicated.
However, with hours of therapy, love, appropriate
educational goals, a child can perform many self-help tasks,
such as feeding, dressing and toileting.
Does he/she have autism?
Many children with 5p-syndrome have had dual diagnoses of
autism and Cri du Chat Syndrome. Many of the symptoms
do overlap one another. Children with 5p– Syndrome also
have moderate to severe behavior issues. Many of these
behavioral issues stem from the inability to communicate
his/her needs.
The 5P– Society is a not-for-profit 501(c)3 organization. Membership
is $25.00 per year. The 5p– Society relies on its members and friends
for donations.
PO Box 268
Lakewood, CA 90714-0268
www.fivepminus.org
[email protected]
Phone: (562) 804-4506
Toll Free: (888) 970-0777
Fax: (562) 920-5240
The national family support group for
individuals with Cri Du Chat Syndrome
www.fivepminus.org
Mission Statement
To encourage and facilitate communication among families having a child with 5p–Syndrome
and to spread awareness and education of the syndrome to these families and their service providers.
About 5P-Syndrome
Each year in the United States, approximately one in 50,000
newborns is diagnosed with 5p– Syndrome. This means
that approximately 70 children are born with this rare
genetic syndrome every year. 5p– Syndrome is also known
as Cri du Chat Syndrome (CdCS), Cat Cry Syndrome, or
Cry of the Cat. 5p– Syndrome is characterized at birth by
a high pitched cry, low birth weight, poor muscle tone,
microcephaly, and potential medical complications. “5p-”
is a term used by geneticists to describe a portion of the
short arm of chromosome number five (5) that is missing in
these individuals. Some of the facial characteristics include:
Who Are We?
The 5p- Society is the national family support group for
individuals with Cri du Chat Syndrome (CdCS). The 5p–
Society was founded in 1986 by a small group of parents
of children with 5p- Syndrome. Their intent was to share
information about the syndrome with other families and
to provide the opportunity to meet and share common
experiences. Since 1986 the 5p– Society membership has
grown to more than 1000 families throughout the United
States, Canada and other countries around the globe.
The 5p– Society is organized by a Board of Directors
made up of parent volunteers. The Society has also
formed a Professional Advisory Board (PAB) made up of
medical and scientific professionals who have specialized
experience with 5p– Syndrome children. Some of the
members of the PAB have dedicated their entire careers to
5p– Syndrome research.
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Round “moon shaped” face
Small upturned nose at birth
Small or low set chin (micrognathis)
Low positioned ears
Downward slanting of the eyes
Wide spaced eyes
Extra skin fold at the inner corner of one or both eyes
(epicanthal fold)
These facial features usually elongate as the child
enters adulthood.
language having the most extensive delays. Some children
are able to use short sentences, while others express
through communication devices, gestures and a few basic
words. Nearly all children with 5p– Syndrome have poor
muscle tone when they are young. Poor muscle tone can
result in feeding difficulties, weakened joint muscles,
delays in sitting, crawling and walking. Some 5p– children
do accomplish these skills at a normal age level. Children
may also show signs of hyperactivity, scoliosis, and mild to
severe developmental delays.
A small amount of children are born with serious organ
defects and other life threatening medical conditions;
however, most individuals with 5p– Syndrome can anticipate
a normal life expectancy.
Both children and adults with this syndrome are usually
friendly and happy and enjoy social interactions. Years
ago, it was common to place children with 5p– Syndrome
in institutions with other severely delayed individuals.
Research has revealed that children who receive ongoing
support from a team of therapists (speech, occupational and
physical), medical professionals, educational professionals,
and parents can help the child to achieve his or her
maximum potential. Children with Cri du Chat Syndrome
can lead full and meaningful lives with love and support.
Other physical characteristics may include a single
horizontal simian crease on the palms of their hands. The
cat-like cry at birth is high-pitched and usually changes
during puberty. Most children show varied delays in
the area of gross and fine motor skills, with speech and
Cri du Chat Syndrome Awareness Day - May 5th
International Cri du Chat Awareness Week - Full Week Surrounding May 5th