New MoCo-based organization brings advocacy for epilepsy funding to Congress

Hannah Linsin was walking down the stairs in her family’s Potomac home when, suddenly, time stopped, her mother recalls that March 2022 day.

“We think she had a seizure. I saw her start to fall, and it was like a slow-motion horror movie,” Julie Blum said. “I ran to her at the bottom of the stairs and screamed for my husband, who came running.”

Finding her 25-year-old daughter silent and still, she feared the worst. She and her husband were relieved when Linsin began to make sounds and move her arms and legs. But the injuries were severe—a concussion, a broken arm, a dislocated elbow—and long-lasting damage. Blum said that her daughter is still in physical therapy 20 months later to strengthen her left side and increase the use of her left arm and hand.

Linsin did not tell the story herself because she has profound intellectual disabilities and limited verbal skills. She has a rare form of epilepsy from a genetic disease called Tuberous Sclerosis Complex, which causes benign tumors to grow in the brain and several areas of the body, including the spinal cord, nerves, eyes, lungs, heart, kidneys and skin.

Prior to the fall, her seizures were infrequent, and she could walk up and down the stairs by herself. Now, she typically has at least three seizures a week and is always supervised on the stairs, in case of a seizure.

“The burden of epilepsy is big,” Blum said. “It’s big on individuals who have epilepsy. And it’s big on families, especially for children who have epilepsy, whose cognitive outcomes will potentially be poor. It’s a point that I think the Epilepsies Action Network wants to share.”

The Epilepsies Action Network was launched in August 2022 in Montgomery County to unite the many disparate epilepsy organizations in the U.S. behind one cause: driving federal funding for epilepsy, which affects 3.4 million Americans, according to the U.S. Centers for Disease Control and Prevention. (The network’s co-founders, Scott and Jillian Copeland of Rockville, are the owners of MoCo360.)

No cure exists for epilepsy, though some juvenile patients may outgrow it, according to Yale Medicine.

Many patients are treated with anticonvulsants, with varying degrees of success, according to the Epilepsy Foundation. The disease’s impact on quality-of-life ranges; patients whose seizures are well controlled can drive and live independently, while others suffer devastating effects on their motor functions, speech, intellect and other systems, according to the Epilepsy Foundation.

People with epilepsy are three times more likely to suffer premature death than the general population, according to the World Health Organization.

Epilepsies Action Network brings together people with every type of epilepsy, including the rarest forms. Ultimately, group members say, they want to do for epilepsy what has already been achieved with cancer: not just funding effective treatments but bringing it out of the shadows.

“There’s so many different types of epilepsies, but we all need to be one strong voice, [and there’s] power in numbers, which is where Epilepsies Action Network comes in,” said Jessica Johnson, 37, of Olney, whose 5-year-old son Kai suffers from SynGap1, a rare genetic condition and form of epilepsy.

Representatives of the group and others made their case during a congressional briefing Tuesday on Capitol Hill that also featured the new Congressional Epilepsy Caucus, formed in February. Reps. Jim Costa (D-Calif.) and Greg Murphy (R-N.C.) are the co-chairs. Rep. Steny Hoyer (D-St. Mary’s County), whose late wife suffered from epilepsy, also attended the briefing, timed to coincide with National Epilepsy Month.

Epilepsy affects about 4 million Americans, and the National Institutes of Health spent $212 million on the disease in fiscal 2022. On the other hand, Alzheimer’s affects around 6 million Americans, but the NIH spent $3.5 billion on that disease, according to the NIH.

Fiscal 2023 numbers for NIH funding are not yet available.

“The idiopathic epilepsies [the category most epilepsies fall into] are some of the most burdensome neurological disorders in the U.S., based on a recent survey. Moreover, epilepsies together impose an annual economic burden of $28 billion on the country, yet only half of a percent of the more than $42 billion the NIH spends on medical research each year, goes to epilepsy,” Katie Collins, vice president of G2G Consulting, which provides policy consulting services for businesses and non-profits, told MoCo360 in an email.

Other agencies, including the Centers for Disease Control and Prevention, Veterans Affairs and Department of Defense, also provide epilepsy funding.

 Jillian Copeland’s son Nicolas, 24, has suffered from epilepsy for most of his life.

“We founded the Epilepsies Action Network because we have watched the severe impacts to Nicolas, his brothers and our family for the past 24 years,” Jillian Copeland said at the briefing. Jillian and Scott Copeland previously founded the Diener School, which provides multi-sensory education, and Main Street Connect, an inclusive living community in Rockville.

Nicolas Copeland described living with epilepsy in a video shared during the briefing.

“My first seizure was when I was 8 months old, and it was a long one. Living with seizures isn’t fun. I worry sometimes that I will have one,” he said. “Because of all my meds, I feel drowsy.”

He said he hopes that one day he can live on his own and that researchers can find a cure.

Jillian Copeland described a marathon of seizures, evaluations, treatments and interventions.

“Our epilepsy journey… has included more than 150 seizures, brain surgery, EEGs, EKGs doctor visits, countless emergency room visits, and trials of many, many different epilepsy medications,” she said. “Our journey has consisted of thousands of hours of medical interventions, language, psychological, occupational, behavioral, and learning interventions.”

Jillian Copeland said that her and her family’s bottom line is: “I want to tell [Nicolas] that one day he is not going to have seizures.”

She said she hopes that can be true for the millions of others in the United States with epilepsy.

Johnson, too, described aspects of her son’s epilepsy and its impact.

“In the beginning, Kai was having up to 200 seizures a day,” she said, “and I definitely feel a bit of trauma from having to have seen him like that.”

One in 26 people will develop epilepsy in their lifetime, according to the NIH.

Researchers estimate that, for every 1,000 people with epilepsy, at least one person may die from Sudden Unexpected Death in Epilepsy each year, according to the CDC.

Epilepsy Foundation President and CEO Bernice Martin Lee, who suffers from epilepsy herself, said that the reason everyone was gathered at the briefing was to discuss a letter submitted to the U.S. House and Senate Appropriations Committees where: “54 organizations speak with one voice to urge certain funding levels for critical epilepsy research and programs in the final fiscal year 2024 budget,” Lee said.

This briefing is one of the first concerted bids across the many kinds of epilepsy for a cohesive national response, according to Lee.

“During National Epilepsy Awareness Month, we are here to bring epilepsy out of the shadows and encourage and advocate for change,” Lee said. “There are numerous people who have felt the stigma that an epilepsy diagnosis brings.”

Hoyer criticized the proposed budget for fiscal 2024. Epilepsy funding figures were not immediately available, but he said, “This budget is unacceptable because it badly underfunds not just research on epilepsy, but basic biomedical research across the board…We need to speak with one voice about how much difference the research is making, how much progress we’re making and how much more progress we could make if we had adequate funding.”

The caucus and these organizations oppose funding cuts in the budget to NIH, which is the largest government funder of epilepsy-related research.

Caucus co-chairs Costa and Murphy both shared their stories of having someone in their lives with epilepsy. They called for more members of Congress to join the caucus and argued that there should be an epilepsy caucus in the U.S. Senate as well.

“I think we’re on the verge of groundbreaking as far as new medicines and new therapies,” Murphy said. “We’re trying to pour research or widely sought-after dollars [into getting] those things that will lead us to a cure.”

Blum said that even though the treatments and medications that currently exist are not ideal, they have made an enormous difference in her daughter’s life.

Linsin can talk to those around her, communicating her basic needs and participating in her favorite activities. Most importantly, she’s happy, Blum said.

“She just loves listening to music in her room like a typical young person. She loves to color, and she loves to go to Starbucks. She loves to get boba tea, and she loves watching movies over and over and over again,” Blum said. “She loves to give hugs, and she loves to get hugs.”

Blum hopes that treatments in the future can be even more effective at stopping seizures and improving the lives of those with epilepsy.

“We don’t understand enough about epilepsy, and if you can understand more about epilepsy, you can potentially get better treatment options, so that’s…the mission here,” Blum said.