PRINTER'S NO. 2296
No. 254 Session of 2001
INTRODUCED BY FRANKEL, COSTA, ARMSTRONG, BEBKO-JONES, BELARDI,
BELFANTI, CALTAGIRONE, CAPPELLI, CLARK, CORRIGAN, COY,
DERMODY, DIVEN, D. EVANS, GABIG, GEORGE, GRUCELA, HERSHEY,
JAMES, LAUGHLIN, MANN, MARKOSEK, NAILOR, READSHAW, ROSS,
RUBLEY, SANTONI, SAINATO, SATHER, SHANER, B. SMITH, STABACK,
E. Z. TAYLOR, WOJNAROSKI, MELIO, HENNESSEY, LEDERER, SOLOBAY
AND BROWNE, JUNE 19, 2001
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
JUNE 19, 2001
A RESOLUTION
1 Designating the week of July 16 through 22, 2001, as "CHARGE
2 Syndrome Awareness Week" in Pennsylvania.
3 WHEREAS, CHARGE syndrome affects individuals born with a
4 specific set of birth defects associated with anomalies of the
5 eyes, ears, face, heart, nasal passages, cranial nerves, lungs,
6 gastrointestinal tract, genitals, urinary tract and kidneys; and
7 WHEREAS, Due to hearing and vision defects, many of these
8 individuals are diagnosed as deafblind; and
9 WHEREAS, Individuals with CHARGE syndrome are unable to
10 swallow, smell or taste and may have such conditions as cleft
11 lip and palate, tracheoesophageal fistula, poor muscle tone and
12 poor immune response; and
13 WHEREAS, The cause of CHARGE syndrome is not yet known, and
14 the incidence is about 1 in 10,000 to 1 in 15,000 births; and
15 WHEREAS, Infants with CHARGE syndrome often spend weeks or
1 even months in the hospital; and
2 WHEREAS, With the proper diagnosis and early intervention,
3 individuals with CHARGE syndrome can survive and become healthy
4 and productive citizens; and
5 WHEREAS, There is an overwhelming need to raise public
6 awareness of CHARGE syndrome in the medical, educational and
7 general public because this condition remains underdiagnosed by
8 physicians and pediatricians who are unfamiliar with its
9 characteristics, and children are dying as a result; therefore
10 be it
11 RESOLVED, That the House of Representatives designate the
12 week of July 16 through 22, 2001, as "CHARGE Syndrome Awareness
13 Week" in Pennsylvania.
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