PRINTER'S NO. 2492
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
498
Session of
2019
INTRODUCED BY KINSEY, MADDEN, BIZZARRO, SAINATO, BURNS,
LONGIETTI, HILL-EVANS, McCLINTON, ROTHMAN, SONNEY, KORTZ,
DiGIROLAMO, BOBACK, FREEMAN, MILLARD, THOMAS, HARKINS,
KOSIEROWSKI, KIM, READSHAW AND MURT, SEPTEMBER 18, 2019
REFERRED TO COMMITTEE ON HEALTH, SEPTEMBER 18, 2019
A RESOLUTION
Designating the month of October 2019 as "Rett Syndrome
Awareness Month" in Pennsylvania.
WHEREAS, Rett syndrome was first identified in the 1960s by
Austrian physician Dr. Andreas Rett; and
WHEREAS, Rett syndrome is a rare, genetic neurological
disorder occurring almost exclusively in girls; and
WHEREAS, It is estimated that Rett syndrome occurs in
approximately one in every 10,000 to 15,000 female births
worldwide and affects an estimated 15,000 girls and women in the
United States and 350,000 girls and women globally; and
WHEREAS, A child with Rett syndrome suffers from
developmental regression after 6 to 18 months of normal
development following birth, including severe impairments that
affect the child's ability to speak, walk, eat and breathe; and
WHEREAS, Rett syndrome may also be characterized by a child's
inability to perform motor functions, the inability to
communicate, seizures, scoliosis, sleep disorders, microcephaly,
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irregular breathing and the loss of functional use of hands
which results in the development of compulsive hand movements;
and
WHEREAS, Researchers have determined that the primary cause
of Rett syndrome is linked to a random mutation in the MECP2
gene; and
WHEREAS, Researchers have developed a genetic test to
complement a clinical diagnosis of Rett syndrome; and
WHEREAS, Although less than 1% of recorded cases of Rett
syndrome are due to genetic inheritance of the MECP2 mutation,
some families of individuals with Rett syndrome have been found
to have other female family members with an MECP2 mutation who
have not shown any clinical symptoms; and
WHEREAS, Prenatal testing is available for families with a
daughter affected by Rett syndrome; and
WHEREAS, The risk of a family having a second child with Rett
syndrome is less than 1%; and
WHEREAS, Early developmental intervention is crucial for
those who have been diagnosed with Rett syndrome, as children
can receive the necessary therapy and services to help them
reach their full potential; and
WHEREAS, Rett syndrome is often undiagnosed or misdiagnosed
due to sharing similar symptoms with autism, cerebral palsy and
nonspecific developmental delay; and
WHEREAS, Rett syndrome can present in an array of
disabilities which result in complex and varied treatment
options for those individuals who are diagnosed with Rett
syndrome and often require the coordinated efforts of a team of
specialists; and
WHEREAS, Although there is no cure for Rett syndrome, well-
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designed treatment plans may slow the loss of abilities, improve
or preserve movement and encourage communication and social
contact; and
WHEREAS, Great strides in understanding the cause of Rett
syndrome have been made in recent years allowing researchers to
develop better methods of diagnosis and new therapies to manage
specific symptoms and identify biochemical manipulations that
may prevent the progression of the disorder; therefore be it
RESOLVED, That the House of Representatives designate the
month of October 2019 as "Rett Syndrome Awareness Month" in
Pennsylvania; and be it further
RESOLVED, That the House of Representatives recognize "Rett
Syndrome Awareness Month" to raise awareness, acknowledge
families and individuals living with Rett syndrome and
recognize the importance of finding a cure.
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