[Congressional Record Volume 169, Number 63 (Monday, April 17, 2023)]
[Extensions of Remarks]
[Page E311]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 RAISING AWARENESS FOR BARTH SYNDROME BY PROPOSING APRIL 5, 2023 TO BE 
               KNOWN AS ``BARTH SYNDROME AWARENESS DAY''

                                 ______
                                 

                           HON. RALPH NORMAN

                           of south carolina

                    in the house of representatives

                         Monday, April 17, 2023

  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.

                          ____________________