Raising Awareness for Barth Syndrome By Proposing April 2023 to Be Known As ``Barth Syndrome Awareness Day''

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Mr. NORMAN. Mr. Speaker, I rise today to support raising awareness for Barth Syndrome by proposing April 5, 2023 to be known as ``Barth Syndrome Awareness Day''.

Barth Syndrome is a life-threatening ultra-rare disease that effects around 150 individuals within the U.S. In particular, I want to highlight the work of Shelley Bowen who is a constituent of South Carolina, and her amazing work as the founder and former Chair of the Barth Syndrome Foundation, which she started in 2000.

Shelly's activism was born out of necessity when her two sons, Evan and Michael, were diagnosed with heart failure. Shelley spent every spare moment in search of a diagnosis and in 1990, she finally received some answers. Her tireless work and dedication to raise awareness, provide support, and search for a cure has been incredibly profound and admirable.

Please join me in thanking Shelly for her efforts in raising awareness for Barth Syndrome and for founding the Barth Syndrome Foundation.

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