HR0342LRB101 12284 ALS 60045 r

1
HOUSE RESOLUTION

 
2    WHEREAS, The Illinois House of Representatives wishes to
3raise awareness surrounding the rare disease of Spinal Muscular
4Atrophy; and
 
5    WHEREAS, Spinal Muscular Atrophy is a degenerative,
6genetic neurological condition that affects and prevents
7motor-control neurons from sending signals from the central
8nervous system to the body's muscles that, in turn, causes the
9loss of muscle control and ultimately muscle wasting; and
 
10    WHEREAS, Spinal Muscular Atrophy is a rare genetic
11neuromuscular disease; and
 
12    WHEREAS, In the United States, an estimated one in 11,000
13babies are born with spinal muscular atrophy; and
 
14    WHEREAS, There are four types of spinal muscular atrophy,
15the most severe of which may require a ventilator and feeding
16tubes; and
 
17    WHEREAS, Spinal muscular atrophy affects everyone
18differently, and symptoms can vary greatly according to the age
19of onset and the severity of the disease; and
 

 

 

HR0342- 2 -LRB101 12284 ALS 60045 r

1    WHEREAS, Those who suffer from spinal muscular atrophy have
2normally developed brains and are bright, sensitive, and full
3of life despite their diagnosis; and
 
4    WHEREAS, Unlike many other rare neuromuscular diseases,
5there is a clear understanding of the specific genetic cause of
6spinal muscular atrophy; and
 
7    WHEREAS, Ongoing research offers the promise that a cure
8for spinal muscular atrophy may one day be found; and
 
9    WHEREAS, Increased awareness of spinal muscular atrophy
10will lead to increased knowledge and increased support for both
11disease research and the families affected by the disease;
12therefore, be it
 
13    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE
14HUNDRED FIRST GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that
15we declare August 2019 as Spinal Muscular Atrophy Awareness
16Month in the State of Illinois, and we encourage continuing
17research on Spinal Muscular Atrophy and community support for
18those affected with the disease.