A RESOLUTION

 

1Designating May 15, 2014, as "Morquio Syndrome Awareness Day" in
2Pennsylvania.

3WHEREAS, Morquio Syndrome is an inherited disease which
4causes the body's inability to process long-strand sugar
5molecules called keratin sulfate; and

6WHEREAS, Morquio Syndrome is part of a group of lysosomal
7storage disorders called mucopolysaccharidoses (MPS), in which a
8deficiency or malfunction of specific lysosomal enzymes leads to
9an abnormal accumulation of certain complex carbohydrates in the
10body; and

11WHEREAS, According to the National Institutes of Health the
12frequency of Morquio Syndrome is 1 in 200,000 births with
13symptoms manifesting between one and three years of age; and

14WHEREAS, Morquio Syndrome causes physical abnormalities as
15well as respiratory, cardiac, eye, ear and skin abnormalities;

1and

2WHEREAS, There is no cure for Morquio Syndrome or other MPS
3disorders, although enzyme replacement therapy can be used to
4treat the disease; and

5WHEREAS, Without treatment, the life expectancy of an
6individual afflicted with Morquio Syndrome and other MPS
7disorders begins to decrease at a very early stage in the life
8of the individual; and

9WHEREAS, Treatments for Morquio Syndrome and other MPS
10disorders can be enhanced through the development of early
11detection techniques and early intervention; and

12WHEREAS, Treatments and research advancements for Morquio
13Syndrome are limited by a lack of awareness about MPS disorders,
14which extends to individuals within the medical community; and

15WHEREAS, The development of effective therapies and a
16potential cure for Morquio Syndrome and other MPS disorders can
17be accomplished by increased awareness, research, data
18collection and information distribution; therefore be it

19RESOLVED, That the House of Representatives designate May 15,
202014, as "Morquio Syndrome Awareness Day" in Pennsylvania.