PRINTER'S NO. 1178
No. 84 Session of 2001
INTRODUCED BY LOGAN, STACK, THOMPSON, COSTA, BOSCOLA, LAVALLE, TARTAGLIONE, DENT, TOMLINSON, KUKOVICH, O'PAKE, SCHWARTZ, WAGNER, MUSTO, ORIE, BODACK, MURPHY, KASUNIC, FUMO AND EARLL, JUNE 11, 2001
REFERRED TO RULES AND EXECUTIVE NOMINATIONS, JUNE 11, 2001
A RESOLUTION 1 Recognizing the week of July 16 through 22, 2001, as "CHARGE 2 Syndrome Awareness Week" in Pennsylvania. 3 WHEREAS, CHARGE syndrome is a rare condition affecting 4 individuals born with a specific set of birth defects; and 5 WHEREAS, CHARGE syndrome is associated with multiple 6 anomalies of the eyes, ears, face, heart, nasal passages, 7 cranial nerves, lungs, gastrointestinal tract, genitals, urinary 8 tract and kidneys; and 9 WHEREAS, Due to hearing and vision defects, many of these 10 individuals are diagnosed as deafblind; and 11 WHEREAS, Individuals with CHARGE syndrome may be unable to 12 swallow, smell or taste and commonly have such conditions as 13 cleft lip and palate, tracheoesophageal fistula, poor muscle 14 tone and poor immune response; and 15 WHEREAS, The cause of CHARGE syndrome is not yet known; and 16 WHEREAS, The incidence of this syndrome is about one in 17 10,000 to one in 15,000 births; and
1 WHEREAS, Infants with CHARGE syndrome often spend weeks or 2 even months in the hospital, but their will to live is 3 undeniable; and 4 WHEREAS, With the proper diagnosis and early intervention, 5 individuals with CHARGE syndrome can become healthy, productive 6 and happy citizens; and 7 WHEREAS, There is an overwhelming need to raise public 8 awareness of CHARGE syndrome, a condition which remains 9 underdiagnosed; and 10 WHEREAS, Physicians and pediatricians must know the 11 diagnositc criteria for CHARGE syndrome; and 12 WHEREAS, The CHARGE Syndrome Foundation, Inc., encourages 13 everyone to join with them in recognizing "CHARGE Syndrome 14 Awareness Week"; therefore be it 15 RESOLVED, That the Senate recognize the week of July 16 16 through 22, 2001, as "CHARGE Syndrome Awareness Week" in 17 Pennsylvania. E11L82JS/20010S0084R1178 - 2 -