Pennsylvania SR 127: A Resolution designating June 23, 2025, as "Dravet Syndrome Awareness Day" in Pennsylvania.

Bill Text

PRINTER'S NO. 974
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No. 127
Session of
2025
INTRODUCED BY FLYNN, HUGHES, TARTAGLIONE, MARTIN, LAUGHLIN,
COSTA, PHILLIPS-HILL, STREET, SANTARSIERO, HAYWOOD,
CAPPELLETTI AND FONTANA, JUNE 20, 2025
REFERRED TO RULES AND EXECUTIVE NOMINATIONS, JUNE 20, 2025
A RESOLUTION
Designating June 23, 2025, as "Dravet Syndrome Awareness Day" in
Pennsylvania.
WHEREAS, Dravet syndrome is a rare and catastrophic form of
epilepsy that begins in infancy and is characterized by
prolonged and frequent seizures, developmental delays and a high
risk of sudden unexplained death in epilepsy; and
WHEREAS, Dravet syndrome affects approximately 1 in 15,700
individuals and, despite its rarity, has a profound impact on
the children and families who face its devastating effects; and
WHEREAS, This condition is caused primarily by a mutation in
the SCN1A gene; and
WHEREAS, While advances in genetic testing have improved
diagnosis, there remains no cure and treatment is often complex
and challenging; and
WHEREAS, Families affected by Dravet syndrome endure immense
emotional, physical and financial burdens, often requiring
around-the-clock care and facing limited treatment options; and
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WHEREAS, Increased public awareness and continued research
are essential to improving outcomes, expanding access to
therapies and ultimately finding a cure for Dravet syndrome; and
WHEREAS, June 23 has been recognized as "International Dravet
Syndrome Awareness Day" to honor all those impacted by this
condition and to encourage advocacy, education and research
efforts; and
WHEREAS, It is fitting that the Senate recognize and support
efforts to raise awareness of Dravet syndrome and affirm the
Commonwealth's commitment to supporting those affected;
therefore be it
RESOLVED, That the Senate designate June 23, 2025, as "Dravet
Syndrome Awareness Day" in Pennsylvania; and be it further
RESOLVED, That the Senate urge all residents to learn more
about this disorder and support those individuals and families
living with its challenges.
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