HR 568

                                                 PRINTER'S NO.   3605
             THE GENERAL ASSEMBLY OF PENNSYLVANIA
      HOUSE RESOLUTION
         No. 568
                                         Session of
                                           2026
INTRODUCED BY McANDREW, HARKINS, McNEILL, WAXMAN, SANCHEZ,
   RIVERA, GUZMAN, PROBST, NEILSON, VENKAT, DEASY, HADDOCK AND
   STEELE, JUNE 15, 2026
REFERRED TO COMMITTEE ON HEALTH, JUNE 15, 2026
                          A RESOLUTION
1 Designating June 23, 2026, 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
1WHEREAS, 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
6WHEREAS, 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
10WHEREAS, 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
14WHEREAS, 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 90% of children with Dravet
18 syndrome have a mutated SCN1A gene, further complicating
19 diagnosis; and
20WHEREAS, 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
26WHEREAS, Treatment for Dravet syndrome is often also paired
27 with family counseling and support, physical therapy,
28 occupational therapy and speech therapy; and
29WHEREAS, Dravet syndrome is a rare condition, estimated to
30 affect approximately 20,000 people in the United States, with
20260HR0568PN3605  - 2 -
1 only 1 in 16,000 babies being born with it; and
2WHEREAS, 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
6WHEREAS, 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
11WHEREAS, 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
16WHEREAS, "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
19WHEREAS, The Dravet Syndrome Foundation is recognizing all
20 those that have been lost to this condition on the sixth annual
21 remembrance day held on June 15, 2026; therefore be it
22RESOLVED, That the House of Representatives designate June
23 23, 2026, as "Dravet Syndrome Awareness Day" in Pennsylvania.
20260HR0568PN3605  - 3 -