Expressing support for the designation of "Batten Disease Awareness Day" on June 9.

IV 118TH CONGRESS 1ST SESSION H. RES. 485 Expressing support for the designation of ‘‘Batten Disease Awareness Day’’ on June 9. IN THE HOUSE OF REPRESENTATIVES JUNE 9, 2023 Mr. BEAN of Florida (for himself, Ms. MACE, Mr. MOORE of Alabama, Mrs. GONZA´LEZ-COLO´N, Mr. ROGERS of Alabama, Mr. RUTHERFORD, Mr. POSEY, Mr. PAYNE, Mr. TONKO, Mr. BACON, and Mr. GRIJALVA) sub- mitted the following resolution; which was referred to the Committee on Oversight and Accountability RESOLUTION Expressing support for the designation of ‘‘Batten Disease Awareness Day’’ on June 9. Whereas Batten disease is a fatal rare disease of the nervous system that usually begins in childhood, and is the most common form of a group of disorders called neuronal ce- roid lipofuscinoses, or NCLs for short; Whereas there are approximately 13 known mutations of Batten disease, typically referred to as CLN1 through CLN14, which are all variants of lysosomal storage dis- orders; Whereas Batten disease is an inherited genetic (autosomal re- cessive) disorder whereby brain cells are missing an en- VerDate Sep 11 2014 01:35 Jun 10, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\HR485.IH HR485 pbinns on DSKJLVW7X2PROD with $$_JOB 2 •HRES 485 IH zyme which creates a buildup of metabolic waste, and as a result, the cells gradually lose their function; Whereas Batten disease is known as a rare disease, and its prevalence occurs in approximately 2 to 4 out of every 100,000 births in the United States each year; Whereas symptoms of the disorder vary significantly, and they often include patients exhibiting developmental delays, experiencing seizures, vision loss leading to blind- ness, and loss of motor skills and the ability to walk, talk, or communicate, and some children also endure cog- nitive decline, personality and behavioral changes, demen- tia, and other severely debilitating physical ailments; Whereas depending upon the age of onset of symptoms ini- tially presenting, it can take from a few months to sev- eral years for a child to obtain an accurate diagnosis of Batten disease, and unfortunately, misdiagnosis fre- quently occurs on the family’s journey through the diag- nostic odyssey; Whereas Batten disease currently has very few treatment op- tions available, and it results in premature death occur- ring between early childhood and early adulthood; Whereas there presently is no known cure for any form of Batten disease; and Whereas we recognize June 9 as ‘‘Batten Disease Awareness Day’’: Now, therefore, be it Resolved, That the House of Representatives supports 1 the designation of a ‘‘Batten Disease Awareness Day’’. 2 Æ VerDate Sep 11 2014 01:35 Jun 10, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6301 E:\BILLS\HR485.IH HR485 pbinns on DSKJLVW7X2PROD with $$_JOB