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House of Representatives
Session of 2019 - 2020 Regular Session


Posted: September 24, 2020 12:10 PM
From: Representative Stephen Kinsey and Rep. Maureen E. Madden
To: All House members
Subject: Recognizing “Rett Syndrome Awareness Month” in Pennsylvania
Rett syndrome is a rare, genetic neurological disorder that almost exclusively affects girls.  An estimated 15,000 girls and women in the United States live with Rett syndrome, however, its true frequency is unknown as it may often be misdiagnosed.

After a period of seemingly normal development following birth, a child with Rett syndrome experiences developmental regression, causing severe impairments affecting their abilities to perform motor functions, communicate, eat, and breathe. While genetic and biochemical research has produced promising breakthroughs in the study of Rett syndrome, a cure has yet to be discovered.

It is imperative that we bring awareness to this disease so that those affected by it may feel empowered to seek treatment services for their loved ones and know they are supported by their communities.  Please join us in recognizing Pennsylvanians living with Rett syndrome and their families by designating the month of October 2020 as “Rett Syndrome Awareness Month” in Pennsylvania.

Introduced as HR1029