PRINTER'S NO. 4320
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
1182
Session of
2018
INTRODUCED BY KINSEY, MADDEN, READSHAW, HILL-EVANS, BIZZARRO,
MILLARD, RYAN, DiGIROLAMO, LONGIETTI, J. McNEILL, NEILSON,
THOMAS AND BURNS, NOVEMBER 2, 2018
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
NOVEMBER 2, 2018
A RESOLUTION
Recognizing November 15, 2018, as "Ohtahara Syndrome Awareness
Day" in Pennsylvania.
WHEREAS, Ohtahara syndrome is a rare neurological disorder
that is characterized by seizures and affects infants within the
first three months of life; and
WHEREAS, Ohtahara syndrome is most commonly caused by
metabolic disorders or structural damage in the brain; and
WHEREAS, The cause of many cases of Ohtahara syndrome cannot
be determined; and
WHEREAS, As Ohtahara syndrome progresses, seizures become
more frequent and approximately one in three infants develop
other types of seizure disorders; and
WHEREAS, Developmental delays and motor and cognitive
problems are often present and can grow increasingly worse; and
WHEREAS, Treating this condition is extremely difficult as
the medications that are typically used to treat seizure
disorders are rarely effective in treating Ohtahara syndrome;
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and
WHEREAS, Some children may die before they reach two years of
age, and children who survive are typically left with severe
physical and cognitive disabilities; and
WHEREAS, Ohtahara syndrome is classified as a rare disease,
affecting fewer than 200,000 individuals in the United States;
and
WHEREAS, Because the number of individuals suffering from
Ohtahara syndrome is so small, research efforts to provide
effective treatments are often slow moving and require greater
awareness; and
WHEREAS, The month of November is celebrated as "National
Epilepsy Awareness Month" in an effort to end the stigma
surrounding epilepsy and generate compassion for the 3.4 million
Americans living with an epilepsy disorder such as Ohtahara
syndrome; and
WHEREAS, Hope for children with Ohtahara syndrome relies on
the medical and research community understanding more about this
rare form of epilepsy and discovering treatments that may be the
most effective; and
WHEREAS, "Ohtahara Syndrome Awareness Day" highlights these
research efforts and acknowledges the devastating impact this
disorder has on children and their families; therefore be it
RESOLVED, That the House of Representatives recognize
November 15, 2018, as "Ohtahara Syndrome Awareness Day" in
Pennsylvania.
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