SPINAL ATROPHY AWARENESS MONTH

Illinois General Assembly - Full Text of HR0619

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Full Text of HR0619

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HR0619 - 104th General Assembly

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HR0619
LRB104 17794 MST 31226 r
1
HOUSE RESOLUTION

2

WHEREAS, The members of Illinois House of Representatives
3
wish to raise awareness surrounding the rare disease of spinal
4
muscular atrophy; and

5

WHEREAS, Spinal muscular atrophy is a degenerative,
6
genetic neurological condition that affects and prevents
7
motor-control neurons from sending signals from the central
8
nervous system to the body's muscles, causing the loss of
9
muscle control and ultimately muscle wasting; and

10

WHEREAS, Spinal muscular atrophy is a rare genetic
11
neuromuscular disease; and

12

WHEREAS, In the United States, an estimated one in 11,000
13
babies are born with spinal muscular atrophy; and

14

WHEREAS, There are four types of spinal muscular atrophy,
15
the most severe of which may require a ventilator and feeding
16
tubes; and

17

WHEREAS, Spinal muscular atrophy affects everyone
18
differently, and symptoms can vary greatly according to the
19
age of onset and the severity of the disease; and

HR0619
- 2 -
LRB104 17794 MST 31226 r
1

WHEREAS, Those who suffer from spinal muscular atrophy
2
have normally developed brains and are bright, sensitive, and
3
full of life despite their diagnosis; and

4

WHEREAS, Unlike many other rare neuromuscular diseases,
5
there is a clear understanding of the specific genetic cause
6
of spinal muscular atrophy; and

7

WHEREAS, Ongoing research offers the promise that a cure
8
for spinal muscular atrophy may one day be found; and

9

WHEREAS, Increased awareness of spinal muscular atrophy
10
will lead to increased knowledge and support for both disease
11
research and the families affected by the disease; therefore,
12
be it

13

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE
14
HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that
15
we declare the month of August 2026 as Spinal Muscular Atrophy
16
Awareness Month in the State of Illinois, and we encourage
17
continuing research on spinal muscular atrophy and community
18
support for those affected by the disease.

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