| PRINTER'S NO. 1283 |
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No. | 168 | Session of 2013 |
INTRODUCED BY FOLMER, DINNIMAN, TOMLINSON, WOZNIAK, SOLOBAY, GREENLEAF, FERLO, ROBBINS, STACK, ALLOWAY, FONTANA, SMITH, ERICKSON, BROWNE, HUTCHINSON, RAFFERTY, PILEGGI, VULAKOVICH, COSTA, WAUGH AND WHITE, JUNE 24, 2013
INTRODUCED AND ADOPTED, JUNE 24, 2013
A RESOLUTION
1Recognizing June 24, 2013, as "Smith-Lemli-Opitz Syndrome
2Awareness Day" in Pennsylvania.
3WHEREAS, The Smith-Lemli-Opitz/RSH Syndrome (SLO/RSH) is a
4recessive genetic metabolic disorder that affects the
5development of children before and after birth; and
6WHEREAS, Geneticists have determined that a recessive gene
7blocks cholesterol metabolism in fetuses and children, causing
8SLO/RSH manifestations and certain supplementary cholesterol
9treatments are still in early research stages, but appear
10encouraging; and
11WHEREAS, Almost all SLO/RSH children are born with small
12brains and have varying degrees of slow development and
13intellectual disability; and
14WHEREAS, Children with SLO/RSH have trouble making and using
15cholesterol, which affects their growth, weight and cognitive
16development; and
17WHEREAS, Children's lifespan can be limited by serious
1internal malformations, but with proper nutrition and
2consultation with medical professionals, children with SLO/RSH
3can often have a normal lifespan, and may learn to walk and
4talk; and
5WHEREAS, According to the Smith-Lemli-Opitz/RSH Foundation,
6the syndrome affects one in every 20,000 to 40,000 births,
7including at least 40 families in Pennsylvania; and
8WHEREAS, Carrier testing is now possible by measurement of 7-
9dehycholesterol or enzyme levels in cultured cells, and a more
10accurate DNA test is anticipated; therefore be it
11RESOLVED, That the Senate recognize June 24, 2013, as "Smith-
12Lemli-Opitz Syndrome Awareness Day" in Pennsylvania.