Pennsylvania HR 270: A Resolution designating June 23, 2025, as "Dravet Syndrome Awareness Day" in Pennsylvania.

Bill Text

PRINTER'S NO. 2008
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No. 270
Session of
2025
INTRODUCED BY McANDREW, RIVERA, HOHENSTEIN, McNEILL, GIRAL,
BRENNAN, HILL-EVANS, VENKAT, SANCHEZ, HADDOCK AND DONAHUE,
JUNE 24, 2025
REFERRED TO COMMITTEE ON HEALTH, JUNE 24, 2025
A RESOLUTION
Designating June 23, 2025, as "Dravet Syndrome Awareness Day" in
Pennsylvania.
WHEREAS, Dravet syndrome, formerly referred to as severe
myoclonic epilepsy of infancy, is a genetic form of epilepsy
that is characterized by temperature-sensitive seizures; and
WHEREAS, These temperature-sensitive seizures, also referred
to as febrile seizures, usually begin when an infant is between
four months and twelve months of age and may manifest as grand
mal seizures that involve convulsive movements of the entire
body; and
WHEREAS, Many infants with Dravet syndrome first experience a
hemiclonic seizure where jerking movements only affect one side
of the body, and the seizures are unlikely to stop on their own
and can occur in clusters; and
WHEREAS, After their first febrile seizure, the presence of a
fever is unnecessary for another to occur, and future seizures
could be triggered by any slight change in body temperature; and
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WHEREAS, Before the onset of these seizures, infants with
Dravet syndrome reach their developmental milestones in time,
but when seizures begin, the infants begin to exhibit
developmental delays and features of autism spectrum disorder;
and
WHEREAS, In addition to seizures, patients with Dravet
syndrome may experience severe intellectual and developmental
disabilities, motor and speech impairments, behavioral
difficulties and sleep abnormalities; and
WHEREAS, Diagnosis of Dravet syndrome can be delayed and
often requires expensive genetic testing because
electroencephalogram and magnetic resonance imaging tests often
produce normal results when seizures first appear; and
WHEREAS, Genetic testing looks for a pathogenic variant in
the SCN1A gene, which can impair the flow of sodium ions into
brain neurons to lead to an overactivity of neurons that causes
the seizures and epilepsy, but only 70% to 90% of children with
Dravet syndrome have a mutated SCN1A gene, further complicating
diagnosis; and
WHEREAS, Dravet syndrome is treated by reducing or
eliminating seizures through the use of anticonvulsant drugs and
purified forms of cannabidiol that have been approved by the
United States Food and Drug Administration, dietary therapy and
vagus nerve stimulation in situations where medications are
ineffective in controlling seizures; and
WHEREAS, Treatment for Dravet syndrome is often also paired
with family counseling and support, physical therapy,
occupational therapy and speech therapy; and
WHEREAS, Dravet syndrome is a rare condition, estimated to
affect approximately 20,000 people in the United States, with
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only 1 in 16,000 babies being born with it; and
WHEREAS, Patients with Dravet syndrome face a 15% to 20%
mortality rate due to sudden unexpected death in epilepsy,
prolonged seizures, seizure-related accidents and infections;
and
WHEREAS, The Dravet Syndrome Foundation has recognized the
Epilepsy Neurogenetics Initiative at the Children's Hospital of
Philadelphia, or CHOP, as a Dravet Comprehensive Care Center to
acknowledge the expertise of CHOP providers in providing
comprehensive care for children living with Dravet syndrome; and
WHEREAS, Pennsylvania should take pride in having a Dravet
Comprehensive Care Center in our State and in the hardworking
physicians and medical professionals that have dedicated their
lives and careers to helping children with this genetic
neurological condition; and
WHEREAS, "Dravet Syndrome Awareness Month" takes place each
June in the United States, and "International Dravet Syndrome
Awareness Day" is observed on June 23; and
WHEREAS, The Dravet Syndrome Foundation recently recognized
all those that have been lost to this condition on the fifth
annual remembrance day that was held on June 15, 2025; therefore
be it
RESOLVED, That the House of Representatives designate June
23, 2025, as "Dravet Syndrome Awareness Day" in Pennsylvania.
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