A RESOLUTION

 

1Designating the month of October 2014 as "Smith-Magenis Syndrome
2Awareness Month" in Pennsylvania.

3WHEREAS, Smith-Magenis syndrome (SMS) is a chromosomal
4disorder characterized by a recognizable pattern of physical,
5behavioral and developmental features; and

6WHEREAS, Most individuals with SMS are born with a small
7deletion of one member of their 17th pair of chromosomes; and

8WHEREAS, It is the lack of this specific section, known as
917p11.2, which causes a child to develop the features of SMS;
10and

11WHEREAS, The most common features of SMS include a
12characteristic, yet subtle, facial appearance, infant feeding
13problems, low muscle tone, developmental delays, variable levels
14of intellectual disability, early speech delays, middle ear
15problems, skeletal anomalies and decreased sensitivity to pain;

1and

2WHEREAS, The syndrome also includes a distinct pattern of
3neurobehavioral features characterized by chronic sleep
4disturbances, hyperactivity, sudden mood changes and self-
5injurious behaviors; and

6WHEREAS, It is estimated that SMS occurs in 1 out of 25,000
7births in the United States; and

8WHEREAS, SMS is widely under diagnosed, but as awareness of
9it increases, the number of people identified grows every year;
10and

11WHEREAS, Most people diagnosed with SMS have been identified
12since 1995 as a result of improved laboratory techniques that
13allow the accurate detection of this chromosomal deletion; and

14WHEREAS, Early intervention and appropriate speech, physical
15and occupational therapies enable people with SMS to adapt and
16thrive; and

17WHEREAS, Ongoing research offers the hope of new discoveries
18that will enable people affected by this rare condition to live
19more independent lives; therefore be it

20RESOLVED, That the House of Representatives designate the
21month of October 2014 as "Smith-Magenis Syndrome Awareness
22Month" in Pennsylvania and call upon all residents of this
23Commonwealth to observe this month by participating in
24activities to raise awareness of Smith-Magenis syndrome.