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  • Epilepsies Action Network

Call to Increase Epilepsies Awareness & Resources NOW - NEAM2023 Congressional Briefing

Updated: Nov 24, 2023

On Nov 14, the bipartisan Epilepsy Congressional Caucus organized a briefing in cooperation with Epilepsies Action Network (EAN) and our growing partners to increase national awareness of the epilepsies and the urgent need for increased federal resources. Listen to the full Congressional briefing here. A press release about the event is here. And an article published in MOCO260 about the movement and briefing is here.

Bipartisan Epilepsy Caucus Co-Chairs: Congressmen Greg Murphy, MD and Jim Costa exemplified what bipartisan collaboration looks like. Rep.

Rep. Murphy, MD, shared his family's journey when his son Matthew was diagnosed with epilepsy at age 14. He's 29 now and doing well but Rep. Murphy explained, "It was tragic and tough. Very, very tough." Rep. Costa added his commitment, in honor of his long-time friend former Rep. Tony Coelho, to give those who suffer with epilepsy a much needed voice in the nation's capital.

They were joined by special guest Dr. Walter Koroshetz, Director, National Institute of Neurological Disorders & Stroke (NINDS), and long-time epilepsy caregiver and advocate, Rep. Steny Hoyer.

Heartfelt stories of loss, hope, and concern for the burdens of the epilepsies on 3.4million families were shared by Jillian Copeland, Caregiver, Advocate, and Epilepsies Action Network Co-Founder; Gardiner Lapham, Parent, Advocate, & Chair, Partners Against Mortality in Epilepsy (PAME); and Dave Clarke, MD, Chief of Comprehensive Pediatric Epilepsy Program, University of Texas, Dell Children's Hospital.

Bernice "Bee" Lee Martin, new President and CEO of Epilepsy Foundation and a person living with epilepsy moderated the discussion. Bee presented to Senate and House Appropriations Chairs a letter signed by 54 epilepsy organizations urging specific funding levels for epilepsy programs and research in the final FY2024 federal budget. Note this letter also advocated for increased investment in the NIH, rejecting proposed cuts to this vital agency that would completely stifle our progress in understanding and better treating the epilepsies.

"We are speaking with one voice to say the time for more information and investment in epilepsy is urgent." - Bee Martin Lee

The theme throughout the briefing was more research funding and collaboration. Longtime epilepsy caregiver and advocate, Congressman Steny Hoyer (D-MD) praised the epilepsy community for their collaborative organizing and messaging:

"We need to speak with one voice. And this budget is unacceptable because [it] under funds, not just research on epilepsy, but basic biomedical research... what we need is a voice of how much difference the research is making, how much progress they're making, how much more progress we could make if we had adequate funding."

Dr. Walter Koroshetz, Director, National Institute of Neurological Disorders & Stroke, insightfully posited,

"The question is, are there clever ways in which we can make epilepsy care the standard of care - more of an equal no matter where they live, no matter where the socioeconomic status is.

Other poignant points from presenters included:

Jillian Copeland and her four sons each shared their experience of living with a loved one with epilepsy and the life long stress, uncertainty, and fear.

Jillian explained, "Doctors often tell us to have hope... Only 50% of people living with epilepsy respond to medication.

And responding to epilepsy medication means that there's a reduction in seizures or some might become seizure free or a period of time.

When medications work, it's usually a temporyremedy. It's not a cure, and it takes much time in many trials to become stable.

We have had bouts, months and sometimes years being seizure free.... We start living life a little and then boom ... the call comes, it's another seizure. And quite literally our breath or what feels like a breath is taken away. And we hope it doesn't take his.

Gardiner Lapham shared a personal story about the loss of her son Henry 15 years ago. She described how Henry had experienced a few febrile seizures at the age of three brought on by fever and illness. While they were terrifying to watch, Gardiner and her family were told they were not dangerous and he would "grow out of them."

After Henry turned 4, he began to have more regular seizures and was diagnosed with epilepsy. Before he had a chance to become therapeutic on his medication, Henry died in his sleep.

Gardiner's family had no idea he could die from a seizure and she is still haunted by the morning she found Henry. She advocates for increased SUDEP awareness because so many families still don't know the risks of living with epilepsy.

"SUDEP is more common than SIDS - Sudden infant Death Syndrome. Although every new parent learns about SIDS, more parents of kids with epilepsy are never educated about the risk of SUDEP and how to possibly prevent it... People with epilepsy [have] three times greater risk of premature mortality than the general population...The good news is many of many of these deaths could be prevented."

Dr. Dave Clarke lamented that it can take a person who has experienced a seizure 17 years to get access to the right care and treatment. He shared, "This isn't care."

He further explained that "epilepsy is determined by where you live in the US" and "as a matter of fact, persons that are the most affected, under insured, those living outside the NorthEast or West" were often at a disadvantage.

He also described how "epilepsy care is determined by who you are" and that access to a neurologist for people who are "black, Hispanic, Native American, Pacific Islander, First Nation and Native American, as well as from from low density areas, or with complex epilepsy all have more restrictive access and greater likelihood of misdiagnosis." Furthermore, it creates a chain effect leading to "unwarranted medications, less mobility, reduced productivity."

"Timely intervention not only saves lives, but save resources, reduces persons going to the emergency room, persons going to inpatient services, improves access and all of that reduces cost in the long run."

The briefing was well attended in person and online by legislators, families touched by the epilepsies, researchers, clinicians, and thought leaders across the epilepsies.

The briefing was preceded and followed by a day of meetings on Capitol Hill to further educate on the epilepsies. These meetings deepen legislators understanding of the epilepsies and inevitably uncover other persons touched by the epilepsies. During meetings, advocates repeatedly heard from legislators and their staff about the importance of the epilepsies collaborative, unified voice and regular meetings to stay front of mind.

Meeting with Rep. Greg Murphy, MD.
Meeting with Senator Chris Van Holland.

Epilepsies Action Network believes that Together, our voices are stronger.

It takes a large, organized community to pull together these initiatives. EAN is appreciative to the many individuals and organizations that helped make the day a success for all epilepsies.

Appreciation to Jillian Copeland and Scott Copeland for their generous investment in the epilepsies community to create new opportunities for collaboration.

Thanks to the hard work of Laura Weidner, Brandy Fureman and their team at the Epilepsy Foundation and the hustle and "can do" attitude of Liz Powell, Katie Collins, and their team at G2G Consulting, the strategic government relations gurus guiding this effort.

Grateful for the compassion, commitment and perseverance of JayEtta Hecker and Gabi Connecker at DEE-P, Laura Lubbers with CUREEpilepsy, Ilene Miller and the Rare Epilepsy Network (REN), NAB member Kari Luther Rosbeck, as well as Katie Smith, at TSC Alliance. Appreciation to Julie Blum and Jessica Johnson (and Mike Graglia and Syngap Research Fund) for sharing their stories!

@Gardiner Lapham

@Jillian Copeland

@Scott Copeland

@Walter Koroshetz

@Bernice Martin Lee

@National Institute of Neurological Disorders and Stroke (NINDS)

@Rare Epilepsy Network (REN)

@SynGAP Research Fund (SRF)

@The Danny Did Foundation @Angelman Syndrome Foundation

@CACNA1A Foundation

@CFC International

@The CASK Gene Foundation

@CSNK2A1 Foundation


@Dravet Syndrome Foundation

@Dup15q Alliance

@Epilepsy Alliance America

@Epilepsy Learning Health System

@The FamilieSCN2A Foundation

@Foundation For Angelman Syndrome Therapeutics

@Glut1 Deficiency Foundation

@HNRNP Family Foundation

@Hope for HIE (Hypoxic Ischemic Encephalopathy)

@International Foundation for CDKL5 Research (IFCR)

@International SCN8A Alliance

@Joey's Song

@KCNQ2 Cure Alliance

@KCNT1 Epilepsy Foundation

@KDVS Foundation

@KPTN Alliance

@Lennox-Gastaut Syndrome (LGS) Foundation

@Norse institute

@Paul's Purple Warriors

@Pediatric Epilepsy Surgery Alliance

@Phelan-McDermid Syndrome Foundation

@RASopathies Network USA

@Ring14 USA

@Snap25 Foundation

@The Sturge-Weber Foundation

@STXBP1 Foundation

@SYNGAP1 Foundation

@TBC 1D24 Foundation

@TESS Research Foundation


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