Jack with State Senators Don Harmon and Kwame Raoul at the Ann and Robert H Lurie Children’s Hospital of Chicago on Friday to celebrate the new KCNQ2 Awareness week in Illinois.
Friday night, March 2, 2018, at the Ann and Robert H. Lurie Children’s Hospital of Chicago saw a memorable gathering of doctors, lawmakers, scientists, parents, siblings and children affected by KCNQ2-related epilepsy.
Spreading KCNQ2 awareness is important to me –Rick Terven
On that day, the State of Illinois gave the KCNQ2 community a sense of hope with the passing of a resolution that designates the first week of March as KCNQ2 Awareness Week. This recognition is the latest exciting step that adds to our efforts to bring attention and resources to the fight against KCNQ2-related epilepsy.
“Spreading KCNQ2 awareness is important to me, because there are ways to improve the outcomes for many children with neonatal onset epilepsy disorders,” says Rick Terven, dad of one-year-old Amelia who has KCNQ2-related epilepsy.
“We can help children in those critical first few months to get diagnosed and properly treated much quicker than is currently happening in many instances.” It was through the efforts of Rick and Michelle Terven that this resolution was passed. A huge thanks to them!
All had the chance to speak with the doctors and scientists who are constantly pushing forward in this field. The families visited with each other and the siblings played together. At the end of the day, we all had a little more hope than we did before.
Pediatric epileptologist Dr. John Millichap, who was in attendance at Friday’s festivities, says, “Public awareness of KCNQ2 encephalopathy is important for many reasons. I would like to emphasize that physicians caring for young children with unexplained seizures should consider genetic testing early since a positive result can lead to specific options for treatment and prevention of sequelae.”
What a fantastic event for the families of these beautiful children. What started out as a few isolated cases has grown into a global crusade to help these kids win this war.