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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