To ensure a nationwide impact into every state and community where we can benefit even more people affected by epilepsy — the Epilepsy Foundation is optimizing our nationwide network of frontline organizations as well as volunteers, partners, collaborators and technology. The Epilepsy Foundation gets stronger as each individual and family affected by epilepsy actively shares their story to raise awareness and resources and speaks up to ensure positive change. Every story of epilepsy is vital because stories spread awareness which results in more resources for rights, lives, care, research and therapies to End Epilepsy.
The Epilepsy Foundation has a wide range of impact – from courthouses to congress. It’s all important. But to sustain and grow, we need more advocates to sign-up and speak-up with and on behalf of people with epilepsy. We need more individuals who will share their stories of epilepsy because stories spread awareness that benefits, protects and preserves the rights of people affected by epilepsy.
Advocates from all 50 states have signed-up to take action.
Major legislation affecting most every family affected by epilepsy was endorsed and promoted by EF – Americans with Disabilities Act of 1990, ADA Amendments Act of 2008, Health Insurance Protection and Portability Act of 2005, Medicare Modernization Act of 2007, Developmental Disabilities Bill of Rights Act of 1975, Rights to Education for Handicapped Children (IDEA) of 1975.
Landmark milestones aided by EF – creation of National Institutes of Health (NIH) Epilepsy Branch, the National Centers for Excellence in Epilepsy, the epilepsy public health education program at the Centers for Disease Control & Prevention (CDC), the epilepsy program for children and families at Health Resources & Services Administration, and VA Centers of Excellence in Epilepsy.
Advocates (adults and teens) across USA are trained to share stories and advocate with legislators in D.C. for causes important to people with epilepsy.
Pieces of legislation signed into law – healthcare, health insurance, research, public health and civil rights – of the total legislation EF engaged in in 2017.
Increase in NIH budget for research for epilepsy and neurological disorders partly as a result of advocacy efforts.
First and only programs for Legal information and advocacy (1978) to address discrimination against people with epilepsy; Epilepsy Legal Defense Fund (2005); and Epilepsy employment and job training – TAPS and then Jobtech.
Established policy document “Health Care Principles” promoting essential health benefits and rights of people with chronic health conditions to treatment & care.
The Epilepsy Foundation has a wide range of — from specialty care to supportive care, from resources to self-management, and from information to intervention. It’s all important. But to sustain and grow, we need more advocates – self-advocates, advocates for loved ones, and advocates for the community so everyone feels empowered and no one feels alone in their fight to End Epilepsy.
Callers assisted with information and referral through the 24/7 Helpline in 5 years.
Engaged participants raising awareness and funds through events they design.
Sites funded since 2013 to implement 3 self-management programs of Managing Epilepsy Well Network: Project UPLIFT (9), PACES in Epilepsy (1), HOBSCOTCH (3).
Epilepsy Specialists trained in 12 years with more planned under Care & Cure Institute.
Online self-management tools such as My Seizure Diary and Texting 4 Control.
Annual National Walks in D.C. have raised $12.24 million since 2007, with about 363 teams and over 2,800 walkers per year.
Signature events organized by Athletes vs Epilepsy raise $500,000+ annually.
The Epilepsy Foundation’s impact ranges from quality of life to preventing early death, from innovation to intervention, from one to many. It’s all important. But to sustain and grow, we need stories that make the complexity of epilepsy more understandable and raise resources to improve and save lives.
Local organizations in our nationwide network.
Institutes with special initiatives for Care & Cure, Innovation, SUDEP and Wellness.
Signature programs include Managing Students with Seizures: A Training for School Nurses, Seizure Training for School Personnel, First Responders Training, Law Enforcement Training, Take Charge of the Facts, Seniors and Seizures Educational Program for Organizations Serving Older Adults, Seizure Training for Childcare Personnel and Employer Training.
Informational brochures created and produced for online and offline distribution.
School and community personnel trained in Epilepsy Recognition & Seizure First Aid since 2011. Of these, 156,515 trained as part of cooperative agreement with CDC under agreement number 1U58DP0026256-010.
Pronged approach to confront and prevent Sudden Unexpected Death in Epilepsy (SUDEP). Collaboration with NIH and other organizations to recommend steps to address mortality in epilepsy (2011); Education co-sponsor Conference on Partners Against Mortality in Epilepsy (since 2012) and funded SUDEP education in 44 states (2017); Awareness Aim for Zero campaign (2017), and Research Innocentive Challenge to develop predictive biomarkers for SUDEP risk (2017).
The Epilepsy Foundation’s impact is significant — from the research pipeline to the frontline marketplace, from lab to life, and from innovation to therapies that change lives now. It’s all important. But to sustain it, every story of epilepsy and voice of those affected is vital as we prioritize research, promote new therapies, and raise funding for more research and new therapies.
Invested in research since 1968, with ~40% invested since 2007.
Clinicians or investigators launched in their early careers with support for training or research grants since the 1960s.
Invested in epilepsy professional work force from 2007-2018 – 69 Junior Investigators, 99 Postdoctoral fellows, 36 Clinical Fellowships, 26 Epilepsy/Neurology Fellows, 69 Graduate Students, 30 College Students.
Research grants awarded in 2017.
Scientific meetings in 2017.
Publications co-authored, including on seizure forecasting, in 2017, and on cannabidiol therapy in 2018
Enrolled in the Rare Epilepsy Network, which is a collaboration with 30 other organizations; Research studies completed using our Rare Epilepsy Network Registry.
New Clinical Trials Portal to connect people with epilepsy to clinical trials.
New Project launched by Innovation Institute to create My Seizure Gauge to predict seizures.
New epilepsy products — Epidiolex, Embrace, zEEG by Zeto, Seizario, Showersentry, and EpiMinder — supported by the Epilepsy Foundation in early stages of development made it into the marketplace.
Collaborating organizations, led by EF, form the PCORI Learning Healthcare System project involving collaboration of equal stakeholders focused on a goal of high quality care, continuous improvement and research and better outcomes for every person with epilepsy.
Participants at 9 epilepsy centers will be followed for two years as part of Human Epilepsy Project-2 on Treatment Resistant Focal Seizures which is led by the EF in partnership with others: HEPstudy.org.
Products being developed for epilepsy in the clinical pipeline were supported by EF Epilepsy Therapy Project which supports therapies from idea to market.
Invested in 90 projects by the EF Epilepsy Therapy Project since 2006.
We are optimizing technology and growing our digital reach to make current information more readily available, speed referral to specialty care, train more people about epilepsy and seizure first aid, connect people to resources and each other, and share the powerful stories of those living with epilepsy. With our expanding research, we can continue to benefit even more people affected by epilepsy across our nation and in every community. (Epilepsy.com, EndEpilepsy.org)
Individuals affected by epilepsy and their families in the U.S. are in digital reach and a growing number are in reach of our frontline partners in our network organization.
Unique visitors to Epilepsy.com each year where 20.4 M pages are viewed by an average of 34,400 daily users.
Subscribers to weekly newsletters and advocacy alert emails.
Facebook community; 50 K on Twitter; and 19 K on Instagram.