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11/12/2019 08:21 AM
Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20190&cosponId=29770
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House of Representatives
Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted: June 7, 2019 11:21 AM
From: Representative Thomas P. Murt
To: All House members
Subject: Spinal Muscular Atrophy Awareness Month
 
In the near future, I plan to re-introduce a resolution designating June 2019 as “Spinal Muscular Atrophy Awareness Month” in Pennsylvania.

Spinal Muscular Atrophy (SMA) is a rare genetically inherited disease affecting the part of the nervous system that controls voluntary muscle movement. SMA is the leading genetic cause of death for infants and toddlers. Among autosomal recessive disorders, SMA is the most common fatal disease and is second in birth prevalence only to cystic fibrosis.

Each year in the United States, one in every 6,000 to 10,000 people develop spinal muscular atrophy, and 1 in every 50 Americans is a genetic carrier of the disease. This rare disorder can interfere with basic life functions such as breathing and swallowing. Currently, there is no known cure for this disease.

During the month of June, I encourage everyone to join together to honor those who have lost their lives, and those who are living with this disease. It is my hope that we can raise awareness about the consequences this devastating illness has on those affected as well as on their families.

Please consider co-sponsoring this resolution designating June 2019 as “Spinal Muscular Atrophy Awareness Month” in Pennsylvania in a continued effort to increase awareness of this genetic disease.



Introduced as HR419