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



<html><body><pre>[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 485 Introduced in House (IH)]

&lt;DOC&gt;






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. 
 Gonzalez-Colon, Mr. Rogers of Alabama, Mr. Rutherford, Mr. Posey, Mr. 
Payne, Mr. Tonko, Mr. Bacon, and Mr. Grijalva) submitted 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 ceroid 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 disorders;
Whereas Batten disease is an inherited genetic (autosomal recessive) disorder 
        whereby brain cells are missing an enzyme 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 blindness, and loss of motor skills and the ability to 
        walk, talk, or communicate, and some children also endure cognitive 
        decline, personality and behavioral changes, dementia, and other 
        severely debilitating physical ailments;
Whereas depending upon the age of onset of symptoms initially presenting, it can 
        take from a few months to several years for a child to obtain an 
        accurate diagnosis of Batten disease, and unfortunately, misdiagnosis 
        frequently occurs on the family's journey through the diagnostic 
        odyssey;
Whereas Batten disease currently has very few treatment options available, and 
        it results in premature death occurring 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 the 
designation of a ``Batten Disease Awareness Day''.
                                 &lt;all&gt;
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