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

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
 1   Designating June 23, 2025, as "Dravet Syndrome Awareness Day" in
 2      Pennsylvania.
 3      WHEREAS, Dravet syndrome, formerly referred to as severe
 4   myoclonic epilepsy of infancy, is a genetic form of epilepsy
 5   that is characterized by temperature-sensitive seizures; and
 6      WHEREAS, These temperature-sensitive seizures, also referred
 7   to as febrile seizures, usually begin when an infant is between
 8   four months and twelve months of age and may manifest as grand
 9   mal seizures that involve convulsive movements of the entire
10   body; and
11      WHEREAS, Many infants with Dravet syndrome first experience a
12   hemiclonic seizure where jerking movements only affect one side
13   of the body, and the seizures are unlikely to stop on their own
14   and can occur in clusters; and
15      WHEREAS, After their first febrile seizure, the presence of a
16   fever is unnecessary for another to occur, and future seizures
17   could be triggered by any slight change in body temperature; and
 1         WHEREAS, Before the onset of these seizures, infants with
 2   Dravet syndrome reach their developmental milestones in time,
 3   but when seizures begin, the infants begin to exhibit
 4   developmental delays and features of autism spectrum disorder;
 5   and
 6         WHEREAS, In addition to seizures, patients with Dravet
 7   syndrome may experience severe intellectual and developmental
 8   disabilities, motor and speech impairments, behavioral
 9   difficulties and sleep abnormalities; and
10         WHEREAS, Diagnosis of Dravet syndrome can be delayed and
11   often requires expensive genetic testing because
12   electroencephalogram and magnetic resonance imaging tests often
13   produce normal results when seizures first appear; and
14         WHEREAS, Genetic testing looks for a pathogenic variant in
15   the SCN1A gene, which can impair the flow of sodium ions into
16   brain neurons to lead to an overactivity of neurons that causes
17   the seizures and epilepsy, but only 70% to 90% of children with
18   Dravet syndrome have a mutated SCN1A gene, further complicating
19   diagnosis; and
20         WHEREAS, Dravet syndrome is treated by reducing or
21   eliminating seizures through the use of anticonvulsant drugs and
22   purified forms of cannabidiol that have been approved by the
23   United States Food and Drug Administration, dietary therapy and
24   vagus nerve stimulation in situations where medications are
25   ineffective in controlling seizures; and
26         WHEREAS, Treatment for Dravet syndrome is often also paired
27   with family counseling and support, physical therapy,
28   occupational therapy and speech therapy; and
29         WHEREAS, Dravet syndrome is a rare condition, estimated to
30   affect approximately 20,000 people in the United States, with

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 1   only 1 in 16,000 babies being born with it; and
 2         WHEREAS, Patients with Dravet syndrome face a 15% to 20%
 3   mortality rate due to sudden unexpected death in epilepsy,
 4   prolonged seizures, seizure-related accidents and infections;
 5   and
 6         WHEREAS, The Dravet Syndrome Foundation has recognized the
 7   Epilepsy Neurogenetics Initiative at the Children's Hospital of
 8   Philadelphia, or CHOP, as a Dravet Comprehensive Care Center to
 9   acknowledge the expertise of CHOP providers in providing
10   comprehensive care for children living with Dravet syndrome; and
11         WHEREAS, Pennsylvania should take pride in having a Dravet
12   Comprehensive Care Center in our State and in the hardworking
13   physicians and medical professionals that have dedicated their
14   lives and careers to helping children with this genetic
15   neurological condition; and
16         WHEREAS, "Dravet Syndrome Awareness Month" takes place each
17   June in the United States, and "International Dravet Syndrome
18   Awareness Day" is observed on June 23; and
19         WHEREAS, The Dravet Syndrome Foundation recently recognized
20   all those that have been lost to this condition on the fifth
21   annual remembrance day that was held on June 15, 2025; therefore
22   be it
23         RESOLVED, That the House of Representatives designate June
24   23, 2025, as "Dravet Syndrome Awareness Day" in Pennsylvania.




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