March 25, 2018
Dear Editor:
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We are writing to strongly encourage your editorial, as well as the communities, support in regard to the passing of HB4142. HB4142 is waiting to be voted upon in the Illinois House of Representatives, we want to encourage all to reach out to your fellow representatives in voting yes to this bill. If this bill is passed it will require infants to be screened for Spinal Muscular Atrophy before the age of one.
Infants are tested for various diseases during their first year of life. Spinal Muscular Atrophy is one of the last diseases tested and usually that is not until doctors have run out of options. The longer the disease progresses without a diagnosis the longer patients have to wait to receive proper treatment. This disease primarily affects the muscles that result in a child’s ability to walk.
We have been lobbying for this bill through which we have learned a great deal from one of the co-sponsors Rep. Hammond. We also got to meet the Sponsor of the bill, Rep. Batinick during a congressional session on March 1st where Rep. Hammond, Rep. Batinick, and all the state representatives present gave us a warm welcome. Through our lobbying efforts, we have secured the support of Rep. Stuart and Rep. Hoffman as well.
We are aware that Spinal Muscular Atrophy is not a common disease. However, if you were a parent of a child that has Spinal Muscular Atrophy wouldn’t you want to know as soon as possible? Or if you’re child has another related disease wouldn’t you want to rule Spinal Muscular Atrophy out?
Sincerely,
SIUE BSW Students
Allie Sweatt: asweatt@siue.edu
Kaytlyn Gordon: kgordon@siue.edu
Lauren Cox: laucox@siue.edu
Abraham Stubblefield: abstubb@siue.edu
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