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  • Epilepsies Action Network

200+ Epilepsies Action Network Stakeholders Write to President Biden to Increase Epilepsy Funding

Updated: Apr 19, 2023


November 7, 2022


President Joseph R. Biden

The White House

1600 Pennsylvania Avenue, NW

Washington, D.C. 20500


Dear President Biden:


We applaud your leadership in improving health outcomes and advancing breakthroughs in research that can save lives, improve the quality of life for patients, and save millions of dollars in health expenditures. As part of your leadership efforts in launching transformative health initiatives such as ARPA-H and the Cancer Moonshot, we respectfully request that you increase federal investment in the vast array of epilepsies that together are among the most common conditions affecting the brain and range in impact from profoundly debilitating to

manageable with therapy. With government investment, we can make critical gains in the understanding of these various epilepsies, develop more effective and targeted therapies, and establish new, transformative models of patient care. An excellent way to highlight the importance of addressing epilepsies would be to issue a presidential proclamation declaring November National Epilepsy Awareness Month and bring further public attention to this disease that has a profound effect on Americans everywhere.


One in 26 people will develop a form of epilepsy in their lifetime1 and 3.4 million Americans

currently live with active epilepsy, including 470,000 children and teenagers.2 The epilepsies can

be deadly, with one out of every 1,000 people dying from sudden unexpected death in epilepsy

(SUDEP).3 Delayed recognition of seizures and inadequate or delayed treatment increase a

person’s risk of subsequent seizures, brain damage, disability, and death. The idiopathic

epilepsies are some of the most burdensome neurological disorders in the US, based on a recent

survey.4 Moreover, epilepsies together impose an annual economic burden of $28 billion on the

country,5 yet only half of a percent of the more than $42 billion the NIH spends on medical

research each year, goes to epilepsy.6

At the fundamental level, epilepsies are disorders of the brain characterized by abnormal nerve cell signaling. This causes seizures, uncontrolled bursts of electrical activities that change sensations, behaviors, awareness, and muscle movements. It is important to note that epilepsy is

a spectrum disease that may affect infants, children, young adults, seniors, wounded warfighters and veterans, and anyone suffering from traumatic brain injury. The epilepsies are comprised of many diagnoses, including an ever-growing number of rare epilepsies. Due to this vast spectrum, there are many different types of seizures and varying levels of seizure control. Furthermore, the challenges of the epilepsies extend far beyond seizures to include cognitive, behavioral, and psychiatric mood disorders, as well as mobility, gastrointestinal, and respiratory issues.7


Despite major advances in science over the past several decades, and valuable support from the

NIH, the overall impact on the lives of people living with epilepsy remains largely unchanged. A

vast number of patients (more than 30% of adults and 20-25% of children) don’t respond to

treatment.8 This number is much higher for patients with rare, genetic epilepsies. There has been

no decrease in premature deaths, especially among children with epilepsies. There are no biomarkers for the vast majority of the epilepsies and few effective technologies to track real-time data from patients living with epilepsy. Clinicians are unable to predict which drugs will be effective for a given patient, which side effects a patient is likely to experience when taking a drug, or what a patient’s future might look like.


As Executive Vice Chancellor and Provost at the University of California, San Francisco, and esteemed epilepsies researcher and neurologist, Dr. Dan Lowenstein has stated - “For the vast majority of my patients, I can’t tell them why this happened; I can’t tell them with any certainty if we have a treatment that will work; and I can’t tell them what their future might hold.”

Funding for research of the epilepsies is disproportionately low compared to other health

conditions, including other major neurological disorders. This funding disparity has worsened

since 2007 and cannot be explained by differences in the incidence or the overall impact of these

diseases on Americans. Another significant challenge to understanding the epilepsies and

developing new therapies is the lack of comprehensive, timely, representative data. The nation

has insufficient surveillance data on the spectrum of the epilepsies, which could account for

some of the disparity in funding that the epilepsies receive. The cause of the disease is unknown

in about 50% of cases, according to the World Health Organization (WHO). This staggering rate

shows the need for quality federal investment to better understand the root causes of the disease

and its progression, and then convert the knowledge acquired into therapies that will improve the

quality of life for those impacted by the epilepsies.


We deeply appreciate your Administration’s efforts to prioritize access to innovation and

eliminate disparate health outcomes across disease states. We commend the establishment of

ARPA-H and your commitment to encouraging the development of breakthrough areas of health

and medicine and transformative new therapies. By investing strategically in epilepsy research,

new therapies and data surveillance through agencies such as ARPA-H, NIH, CDC, and the VA,

we can drive forward innovative approaches backed by robust science to elevate the level of care

people with epilepsy receive. Collaborative efforts across government will also be key to

addressing the challenges related to understanding the epilepsies through increased data tracking

and translating that data into solutions to help patients and save lives.


Thank you for your consideration. The community is unified in our commitment to improving

the lives of people with the epilepsies, and we welcome the opportunity to collaborate with you

to fully utilize available tools, while also developing new ones, to treat epilepsies. It is

imperative that as a nation we do more to better understand the epilepsies, in addition to bringing

forward improved therapies. We strongly encourage you to increase federal investment and

resources in the epilepsies, proportionate to its high personal and economic costs, and to

proclaim November National Epilepsy Awareness Month.

Sincerely,


M. Scott Copeland

Co-Founder, Epilepsies Action Network Co-Founder

Principal, Professional RST Development, LLC

CEO, Z-Pop Media, LLC


Jillian Copeland, MS

Co-Founder, Epilepsies Action Network

Founder, Main Street

Owner & Operator, The Soulfull Café

Founder, The Diener School


Joined By:

Organizations

Alliance to Cure Cavernous Malformation

American Academy of Neurology (AAN)

American Epilepsy Society (AES)

Angelman Syndrome Foundation

CACNA1A Foundation, Inc.

Child Neurology Foundation (CNF)

Coalition to Cure CHD2

COMBINEDBrain

CSNK2B Foundation

CURE Epilepsy

Cure Sanfilippo Foundation

CureSHANK

Danny Did Epilepsy Foundation

DEE-P Connections

Doose Syndrome Epilepsy Alliance

Dravet Syndrome Foundation

Dup15q Alliance

Empowering Epilepsy

Empowering People’s Independence

Epilepsy Advocacy Network

Epilepsy Alliance America

Epilepsy Alliance Louisiana

Epilepsy Association of Western and Central Pennsylvania

Epilepsy Foundation (National)

Epilepsy Foundation Alabama

Epilepsy Foundation Alaska

Epilepsy Foundation Arizona

Epilepsy Foundation Arkansas

Epilepsy Foundation Colorado & Wyoming

Epilepsy Foundation East Tennessee

Epilepsy Foundation Florida

Epilepsy Foundation Georgia

Epilepsy Foundation Greater Orange County California

Epilepsy Foundation Greater Southern Illinois

Epilepsy Foundation Hawaii

Epilepsy Foundation Indiana

Epilepsy Foundation Iowa

Epilepsy Foundation Kentuckiana

Epilepsy Foundation Los Angeles

Epilepsy Foundation Louisiana

Epilepsy Foundation Maryland

Epilepsy Foundation Metro DC

Epilepsy Foundation Metro New York

Epilepsy Foundation Minnesota

Epilepsy Foundation Mississippi

Epilepsy Foundation Missouri & Kansas

Epilepsy Foundation Montana

Epilepsy Foundation Nebraska

Epilepsy Foundation Nevada

Epilepsy Foundation New England

Epilepsy Foundation New Jersey

Epilepsy Foundation New Mexico

Epilepsy Foundation North Carolina

Epilepsy Foundation North Dakota

Epilepsy Foundation Northern California

Epilepsy Foundation Ohio

Epilepsy Foundation Oklahoma

Epilepsy Foundation Oregon

Epilepsy Foundation San Diego County

Epilepsy Foundation South Carolina

Epilepsy Foundation South Dakota

Epilepsy Foundation Utah

Epilepsy Foundation Washington

Epilepsy Foundation West Virginia

Epilepsy Leadership Council (ELC)

Epilepsy Learning Healthcare System

Epilepsy Services Foundation

Epilepsy Services of New Jersey

Epilepsy Support Network of Orange County

FAM177A1 Research Fund

Glut1 Deficiency Foundation

GRIN2B Foundation

Hope for HIE

Hope for ULD

Idaho Comprehensive Epilepsy, PLLC

International Foundation for CDKL5 Research

International SCN8A Alliance

Josh Provides Epilepsy Assistance Foundation

KCNQ2 Cure Alliance

KCNT1 Epilepsy Foundation

Koolen-de Vries Syndrome Foundation

KPTN Alliance

Lennox-Gastaut Syndrome (LGS) Foundation

Longboard Pharmaceuticals, Inc.

Louie's Huwe

Malan Syndrome Foundation

Mickie’s Miracles

Mid-Atlantic Epilepsy and Sleep Center

My Epilepsy Story (MES)

National Association of Epilepsy Centers (NAEC)

NORSE Institute

Partners Against Mortality in Epilepsy (PAME)

Pediatric Epilepsy Learning Healthcare System (PELHS)

Project Alive

Rare Epilepsy Network (REN) Coordinating

Committee

RASopathies Network

Ring14 USA

SATB2 Gene Foundation

SLC6A1 Connect

SMC1A FOUNDATION

SNAP25 Foundation

Sociedad Puertrriqueña de Epilepsia

South Carolina Advocates for Epilepsy

STXBP1 Foundation

SynGAP Research Fund

Telethon Kids Institute

TESS Research Foundation

The CASK Gene Foundation

The Cute Syndrome Foundation

The DESSH Foundation

The Epilepsy Study Consortium (ESC)

The FamilieSCN2A Foundation

The Global Foundation for Peroxisomal Disorders

The NR2F1 Foundation

The Rory Belle Foundation

The Schinzel-Giedion Syndrome Foundation

TSC Alliance


Individuals

Sasha Alick-Lindstrom, MD, FAAN, FAES, FACNS, Department of Neurology, University of Texas

Southwestern Medical Center

Orly Avitzur, MD, MBA, FAAN, President, American Academy of Neurology

Carl Bazil, MD, PhD, Professor of Neurology, Columbia University

Peggy Beem Jelley, President & CEO, Epilepsy Association of Western and Central Pennsylvania

Elinor Ben-Menachem, MD, PhD, Professor of Neurology, Goteborg University

Anne T. Berg, PhD, Adjunct Professor, Neurology, Northwestern University

Madison Berl, PhD Pediatric Neuropsychologist, Children’s National Hospital, Associate Professor,

George Washington University

Terry Jo Bichell, PhD, MPH, Director, COMBINEDBrain

Andria Bilan, CEO, Josh Provides Epilepsy Assistance Foundation

Geraldine Bliss, President, CureSHANK

Chere Chapman, CEO, Ardea Outcomes

Angel Chewning, Pediatric Epilepsy Advocate

Michele Collins, CEO, Hope for ULD

Gabrielle Conecker, President & Co-founder, International SCN8A Alliance

Elizabeth Coulter, Director, Louie’s Howe

Hina Dave, MD, Associate Professor, University of Texas Health Sciences Center Houston

Beth Lewin Dean, MPA, MBA, CEO, CURE Epilepsy

Kamil Detyniecki, MD, Associate Professor of Neurology, University of Miami

Yssa DeWoody, PhD, Cofounder/Director of Research, Ring14 USA

Bree DiVentura, MBA, Executive Director, Epilepsy Study Consortium, Inc.

Tracy Dixon-Salazar, PhD, Executive Director, Lennox- Gastaut Syndrome (LGS) Foundation

Elizabeth Donner, MD, FRCPC

Mary Duffy, Executive Director, Danny Did Epilepsy Foundation

R. Edward Faught, MD

Nathan Fountain, MD, Professor of Neurology

Jacqueline A. French, Chief Medical and Innovation Officer, Epilepsy Foundation; Professor of

Neurology, NYU Langone Health

Daniel Friedman, MD, MSc, Professor of Neurology, New York University Grossman School of Medicine

Brandy Fureman, PhD, Chief Outcomes Officer, Epilepsy Foundation

Alicia Gajewsky, Program Manager, Epilepsy Foundation of Wisconsin

Michael Gelfand, MD, PhD, Associate Professor of Clinical Neurology, University of Pennsylvania

Patricia A. Gibson, MSSW DHL ACSW, Director, Epilepsy Information Service of Wake Forest

University School of Medicine

Barry E. Gidal, PharmD, FAES

Leigh Goldie, Executive Director, Empowering Epilepsy

J. Michael Graglia, Managing Director, SynGAP Research Fund

Brandi Green, Program Director, Epilepsy Foundation of East Tennessee

Kristie Griess, CEO, Visionary Founder, Warrior Mom

Zachary Grinspan, MD, MS, Principal Investigator, Pediatric Epilepsy Learning Healthcare System

Jill Hawkins, Founder & President, FAM177A1 Research Fund

JayEtta Hecker, Executive Director and Co-founder, DEE-P Connections

Rachel Heilmann, President & Co-founder, The Rory Belle Foundation

Susan T. Herman, MD, President, National Association of Epilepsy Centers

Lawrence J. Hirsch, MD, Professor of Neurology, Yale University

Kristina Hone, MBA, Founder/CEO, The CASK Gene Foundation

Veronica Hood, PhD, Scientific Director, Dravet Syndrome Foundation

Chunhui Hu, MD, Attending Doctor, Pediatric Neurologist, Fudan University

Heather Jackson, Founder/President, Doose Syndrome Epilepsy Alliance

Charuta Joshi, MD, MBBS, FAES, CSCN

Peter Kaplan, MD

Siddharth Kapoor, MD, Neurologist

Reena Kartha, PhD, Assistant Professor, University of Minnesota

Sudha Kilaru Kessler, MD, Associate Professor of Neurology and Pediatrics, Children's Hospital of

Philadelphia, Perelman School of Medicine

Pavel Klein, Director, Mid-Atlantic Epilepsy and Sleep Center

Gregory Krauss, Professor of Neurology, Johns Hopkins University

Sandi Lam, MD, Professor of Neurosurgery, Northwestern University Feinberg School of Medicine/Ann

and Robert H Lurie Children’s Hospital

Gardiner Lapham, Trustee, The BAND Foundation

Elinor LaTouche, Executive Director, Epilepsy Foundation of Metro New York

Connie Lee, Psy.D., CEO, Alliance to Cure Cavernous Malformation

Kevin Lind, President & CEO, Longboard Pharmaceuticals, Inc.

Daniel H. Lowenstein, MD, Professor of Neurology, University of California, San Francisco

Meryl Lozano, MBE, Epilepsy Study Consortium

Laura Lubbers, PhD, Chief Scientific Officer, CURE Epilepsy

Gholson Lyon, MD, PhD

Liz Marfia-Ash, President, GRIN2B Foundation

Eric Marsh MD, PhD, Clinical Director, Orphan Disease Center, Associate Professor of Neurology and

Pediatrics, Division of Child Neurology, Children’s Hospital of Philadelphia, Perelman School of

Medicine, University of Pennsylvania

Debra McGrath, Executive Director/Co-founder, Epilepsy Foundation of Kentuckiana

Kimford J. Meador, MD, Professor of Neurology, Stanford University

Kathie Michael, Executive Director, Epilepsy Services Foundation

Ilene Miller, JD, LLM, Director, Rare Epilepsy Network (REN)

Scott Mintzer, MD, Professor of Neurology, Thomas Jefferson University

Amanda Mitchell, MPH, Executive Director, Epilepsy Alliance Louisiana

Carlie Monnier, President, The NR2F1 Foundation

Janna Moore, Executive Director, Epilepsy Support Network of Orange County

Angie Nelson, Executive Director, Epilepsy Advocacy Network

Cara O’Neill, MD, Chief Science Officer, Cure Sanfilippo Foundation

Brandy Parker-McFadden, Executive Director/Founder, My Epilepsy Story (MES)

Rachel Patterson, MPA, Senior Director, Federal Relations & Policy, Epilepsy Foundation

Caitlin Piccirillo, President, The DESSH Foundation

Betsy Pilon, Executive Director, Hope for HIE

Annapurna Poduri, MD, MPH, Professor of Neurology, Harvard Medical School, Physician-Scientist

and Director of Epilepsy Genetics, Boston Children's Hospital

Christy Polk, Treasurer, Epilepsy Foundation of Missouri and Kansas

Carlos Quesada, CEO, Epilepsy Foundation of Northern California

Alex Ramirez, Director, Sociedad Puertrriqueña de Epilepsia

Charlene Son Rigby, President & Co-founder, STXBP1 Foundation

Kari Rosbeck, President & CEO, TSC Alliance

Denise Scott, President, CSNK2B Foundation

Scotty Sims, Director, KCNQ2 Cure Alliance

Jeff Sinsebox, President, Empowering People’s Independence

Joseph Sirven, MD, Professor of Neurology, Mayo Clinic

David Squillacote, MD, Pharmaceutical Neurologist

Karen St. Marie, Founder/Executive Director, South Carolina Advocates for Epilepsy

Tom Stanton, President, Danny Did Epilepsy Foundation

Glenna Steele, Executive Director, Glut1 Deficiency Foundation

Kim Stephens, DBA, President, Project Alive

Claude Steriade, MD, New York University

Joseph Sullivan, MD, Professor of Neurology, University of California, San Francisco

Nuala Summerfield, ACVIM, Founder & Chair, The Schinzel-Giedion Syndrome Foundation

Rebecca García Sosa, MD, Attending Physician and Assistant Professor in Pediatric Neurology and

Epilepsy at Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern Feinberg School of

Medicine

Elyse Tanzer, Clinical Research Coordinator, University of Arizona

William O. Tatum IV, D.O., Professor Neurology, Mayo Clinic

K. Liu Lin Thio, MD, PhD, Professor of Neurology, Washington University in St. Louis

David G. Vossler, MD, Clinical Professor of Neurology, University of Washington

Robert T. Wechsler, MD, PhD, FAES, FAAN, Owner, Idaho Comprehensive Epilepsy, PLLC

Laura Weidner, Esq., Vice President Government Relations & Advocacy, Epilepsy Foundation

Justin West, MD, President, KCNT1 Epilepsy Foundation

Elaine Wirrell, Chief, Child and Adolescent Neurology, Mayo Clinic

Nora Wong, PhD, Executive Director, NORSE Institute

Zoe Zangrilli, Project Assistant, The Epilepsy Study Consortium

Alison Zetterquist, Interim Chief Executive Officer, Epilepsy Foundation




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