Kicking off Spinal Muscular Atrophy Month

August is Spinal Muscular Atrophy (SMA) Month. I presented and passed House Resolution 159 to bring awareness to SMA. Thank you to Tom Meredith and Tyler Gumm for hosting The Parlier Family, TJ Scott – Galesburg FD and me as we kicked off SMA month last Thursday!

HR 159:

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

WHEREAS, Spinal muscular atrophy is a degenerative, genetic neurological condition that affects and prevents motor-control neurons from sending signals from the central nervous system to the body’s muscles that, in turn, causes the loss of muscle control and ultimately muscle wasting; and

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

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

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

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

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

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

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

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

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED THIRD GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare August 2023 as Spinal Muscular Atrophy Awareness Month in the State of Illinois, and we encourage continuing research on spinal muscular atrophy