Bill Summary
This legislation is a resolution expressing support for the designation of "Batten Disease Awareness Day" on June 9th. It acknowledges the seriousness of Batten disease, a fatal rare disease of the nervous system, and the impact it has on individuals and families. The resolution also highlights the different forms and symptoms of Batten disease, as well as the challenges in obtaining an accurate diagnosis and the limited treatment options available. By designating a specific day to raise awareness, the House of Representatives hopes to bring attention to this rare disease and support efforts to find a cure.
Possible Impacts
1. Families with children who have been diagnosed with Batten disease may feel supported and heard by the government, knowing that there is a designated day to raise awareness and advocate for research and treatment options.
2. Medical professionals may be more likely to accurately diagnose Batten disease in children, leading to earlier intervention and potentially improved outcomes.
3. Pharmaceutical companies may be more inclined to invest in developing treatments for Batten disease, knowing that there is government support for raising awareness and finding a cure.
[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 485 Introduced in House (IH)]
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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''.
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