Then-12-year-old Soledad Nadel and her family moved from Brooklyn, NY, to Warren in March 2020, around the time that Nadel had her first seizure. She was diagnosed with epilepsy and, three years later, the Green Mountain Valley School ninth grader has turned her diagnosis into action. She became involved with the Epilepsy Foundation of Vermont, a chapter of the national Epilepsy Foundation. Throughout the pandemic, she has attended meetings for the foundation via Zoom and, recently, was selected to attend the national Teens Speak Up conference put on by the foundation in Washington, DC. She was the sole representative of Vermont, alongside teens from approximately 30 states.
The conference brings together teenaged advocates from across the country to learn, train, and speak to their legislators. According to the Epilepsy Foundation’s website, each teen participant is asked to complete a “Year of Service,” in which they bring action and education about epilepsy back to their communities. The website also says that 470,000 children are living with epilepsy.
While Nadel said that epilepsy does affect her daily life, she is still able to Nordic ski with her GMVS team and live an active life. “I’m still affected by this,” she said. Of the conference, she said, “It was very heartwarming and exciting when you’re in a room with people diagnosed [with epilepsy]. In my daily life, I’ve never met anyone diagnosed with this. It was pretty exciting to meet all those people.”
In addition to meeting peers and learning about the epilepsy caucus and advocacy, Nadel was able to meet staffers in the offices of Senator Peter Welch and Congresswoman Becca Balint, who themselves were not available. The teens were encouraged to talk to their senators and congresspeople about joining the epilepsy caucus and advocating for funding research. “It was a little scary to talk to these older people about this, but interesting,” Nadel said.
Nadel explained that one of the things discussed in the conference was the $13 million recently allocated to fund CDC research related to epilepsy, which she said will, in part, be used to train school nurses how to care for a child having a seizure. She said there has also been talk of training ski patrol on mountains about how to help someone who is having a seizure.
“I am definitely going to be more connected with the Epilepsy Foundation,” Nadel said. “I would like to get more research on this topic and thinking it’s very important people are aware of this condition.”