Marshalltown native Molly Mack, a graphic designer based in Des Moines, first discovered she suffered from epilepsy after going away to church camp as a young teen, and experiencing a seizure in her sleep. With treatment, Mack has been seizure-free for about 12 years. She recently helped to start Iowa Epilepsy Advocates, a group working to pass Seizure Safe Schools legislation.

“I have been working with the Epilepsy Foundation of Iowa to get the word out on supporting a bill that would be just one hour of no-cost seizure recognition training for teachers and staff. It’s different from first aid,” she said. “We chose a dandelion as our logo to symbolize spreading the seed of epilepsy information and advocacy.”

The training could be completed online or on-site, likely alongside other training required by federal and state laws.

Her mom Elly Mack, now retired, was a longtime community school nurse who also spent a decade at Woodbury Elementary School.

“If you talk to 100 school nurses, 75 percent plus would say they’ve had contact with seizures before,” Elly said. “I would think this training would be so reassuring to parents.”

Molly Mack

Molly Mack has teamed with Windsor Heights-based lobbyist Threase Harms.

“This will be our sixth legislative session working on this bill. It has passed twice in the House, with just one no vote each time, but it has not passed in the Senate yet,” Harms said.

Approximately 1 in 26 people will develop epilepsy in their lifetime.

Mack noted that not every school building in Iowa has a nurse onsite. And even if that person is summoned to assist a student having a seizure, quick action is critical.

“There is one school nurse for every 899 students in Iowa’s school system — K-12, public and private,” Harms said. “Most seizures don’t last very long. It could be over before the nurse even gets in the room.”

Elly Mack said Marshalltown is fortunate that every school building in the district has at least one nurse.

They also pointed out that not all seizures manifest the same way. A tonic-clonic seizure, previously called grand mal seizure, causes a loss of consciousness and violent muscle contractions. But other varieties could merely resemble anxiety, staring and muscle weakness and falling.

“A teacher might think a student is just not paying attention or is daydreaming or something like that, and they may not recognize that the student is having a seizure,” Harms said.

Universal staff training would help ensure students are protected on the playground, cafeteria, on field trips, at sporting events and other places a nurse may not be available.

“Epilepsy is an invisible disease. You don’t see it until someone has a seizure. Mine are under control, but I will have to take medicine for the rest of my life and be aware I could have breakthrough seizures,” Mack said. “I try to break the stigma a lot of people have, that we are low-functioning. That’s not true.”

Harms and Mack said they’ve faced opposition to Seizure Safe Schools legislation from private schools and the Iowa Association of School Boards.

“Private schools say they’re capable of taking care of their own students, and the IASB thinks there are too many trainings for educators already,” Harms added. “We have good support from the medical community, not so much from the education community.”

She said the Epilepsy Foundation of Iowa offers free training, but generally, school districts only reach out after there’s been an incident.

If the legislation passes, school staff would possess a certification good for two years.

Another piece of legislation the group is working to help pass pertains to non-medical switching.

“It’s really critical physicians know how to treat their patients, they know what different types of medicines work for different types of seizures,” Harms noted. “So if you get a patient stable on a medication, keeping them on that medication is really critical. But if insurance companies do formulary changes, and switch a drug, seizures can come back.”

Mack said they want people to write state senators asking them to pass the legislation.

“We are working on a letter now that people can copy and paste to send off. I think if we just get the word out we can get this passed,” she said.

To learn more, visit Iowa Epilepsy Advocates on Facebook.