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  • One of the Epilepsy Foundation of America's key strategic priorities is to accelerate new therapies for people with epilepsy and seizures in a time-frame that matters. 

Epilepsy is broadly underfunded and especially so in the translation of research insights into new therapies.

The Epilepsy Foundation of America has dedicated a significant part of our mission since our formation in 1968 to ensuring the best and the brightest young investigators get a chance to become involved in epilepsy and seizure research. Our goal was to make sure they built their careers with a focus on epilepsy. As a result, most of the top epilepsy researchers working today have received an Epilepsy Foundation grant early in their careers.  

The Board of the Epilepsy Foundation of America has taken a broad lens to support the best new therapy ideas we could find anywhere in the world. Thus, together with our Board and a long list of amazing parents, friends, and professionals, the Foundation, with the strength of our recent merger with the Epilepsy Therapy Project, has become an organization dedicated to “accelerating ideas into therapies for people living with epilepsy.”

We do not work alone. In addition to contributions from families affected by epilepsy and their friends, partnerships with other organizations focused on improving the lives of people with epilepsy have been critical to the Epilepsy Foundation and the Epilepsy Therapy Project's ability to fund new therapies and have impact. These include critical funding and support from the Milken Family Foundation, from NYU/FACES, and also from unrestricted educational grants from industry to support the development of content on epilepsy.com.

For 10 years prior to the merger, Epilepsy Foundation of America and Epilepsy Therapy Project partnered to provide  50/50 funding of our New Therapy Grants program.

During that time we provided funding for 38 of the 85 therapies in active development for epilepsy identified now in the epilepsy pipeline. Epilepsy Therapy Project solely funded grants and investments bring the total impact to 45 of the 85. Most exciting is that in the last year, 3 of our EF/ETP funded projects have made it to patients: the Visualase MR guided laser system for epilepsy surgery; the SmartWatch seizure detection and caregiver notification device; and most recently, the non-invasive NeuroSigma eTns stimulator for control of seizures.

Our investment in new therapies and research is 100 percent about bringing better treatments in a time frame that matters to people living with epilepsy and seizures. It is part of our unwavering commitment to the epilepsy community, and we invite you to help us make a difference.

The Epilepsy Therapy Project of the Epilepsy Foundation of America accelerates ideas into therapies for people living with epilepsy and seizures.

More than a third of the more than 2 million people living with epilepsy in the United States have persistent seizures using existing therapies. Many others tolerate serious side effects, including diminished cognition, as a price for seizure control. New therapies introduced over the last decade offer fewer side effects but have done little to bring effective seizure control to the significant population living with active and uncontrolled epilepsy. Despite this serious unmet medical need, research funding for epilepsy is scarce and existing philanthropic support limited. Further, many major pharmaceutical companies have scaled back epilepsy development programs. As a result, successful lab research and new findings are rarely translated into new epilepsy therapy.

The Epilepsy Foundation of America works to overcome the barriers to successful translation of promising new research insights and to make new therapies a reality for patients. We provide financial support and scientific and business direction to promising new therapies, and we invest in programs and platforms that can take time and costs out of new therapy development.

Research Training Grants & Fellowships

Research is the key to the future for people with hard to control seizures -- as many as 600,000 Americans of all ages.

The future of epilepsy research depends on attracting the best scientific minds to the study of seizures and funding innovative research. To do just that, the Epilepsy Foundation offers a series of training grants and fellowships in basic, clinical and behavioral science to scientists at the start of their careers.

Each year the Foundation invites research investigators to apply for grants and fellowships to test new ideas and follow new research leads. The applications, more than 100 in an average year, are ranked according to merit by a blue ribbon panel of research scientists, and funded according to available resources.

These grants and fellowships, awarded to new scientists at the nation's leading research institutes, have in many cases been the first steps in a lifetime commitment to solving the medical and scientific puzzle of why epilepsy develops and how it can be treated or prevented.

Targeted Research Initiatives

The Epilepsy Foundation of America periodically offers funding opportunities to established investigators for targeted research initiatives.

Current targeted initiatives focus on cognitive and psychiatric aspects, health outcomes, morbidity and mortality, youth, women and severe symptomatic forms of epilepsy.

The mission of the Epilepsy Foundation - New Therapy Commercialization Grants Program is to drive the development of new therapies for epilepsy, accelerating the advancement of research from the laboratory to the patient. The Foundation funds innovative senior level research projects led by the nation's leading scientists with the potential to discover new treatment options and ultimately a cure.

The Epilepsy Innovation Seal of Excellence awards are, like the New Therapy – Commercialization (NTC) program above, designed to accelerate the advancement of research from the laboratory to the patient. SEALs are provided to academic and commercial groups worldwide. The program seeks to advance the development of new therapies including but not limited to medicines, biologics or devices. All proposals must demonstrate a clear path from the lab to the patient and are evaluated with consideration for their potential value to patients, likelihood of successful development including regulatory approval and the timeframe of development. Drug development may be stimulated at the early phases leading to an IND. The Epilepsy Innovation Seal of Excellence award is not primarily a grant program. The program provides a competitive, in-depth review by the Scientific and Business Advisory Boards, an actual SEAL that may be used by the awardee to generate interest in the project, and a one-time $25,000 grant for the research. The SEAL is award for one year, renewable upon application, for up to a total of four years; the funding for this award is only provided for the first year. The applicants will typically have a research budget of between 1 and $5M for the overall project--amounts that currently exceed the resources of the Epilepsy Foundation. The Epilepsy Foundation of America will assist the awardees in finding funds for the selected projects. http://www.epilepsy.com/etp/research_programs.

Treatments cannot advance without clinical trials. Clinical trials are necessary to test the effectiveness of new therapies and to develop better ways of using known treatments. In some cases, they can make the difference between life and death for patients or a significantly improved quality of life.

To this end, those with epilepsy are in a special position to help others through participating in medical research that can lead to effective treatments.

Participating in a clinical trial, however, is a significant commitment and one should always have a good understanding about the study and clinical trials in general before any agreement is made.

Clinical Trials

In a clinical trial (also called an interventional study), participants receive specific interventions according to the research plan or protocol created by the investigators. These interventions may be medical products, such as drugs or devices; procedures; or changes to participants' behavior, for example, diet. Clinical trials may compare a new medical approach to a standard one that is already available or to a placebo that contains no active ingredients or to no intervention. Some clinical trials compare interventions that are already available to each other. When a new product or approach is being studied, it is not usually known whether it will be helpful, harmful, or no different than available alternatives (including no intervention). The investigators try to determine the safety and efficacy of the intervention by measuring certain outcomes in the participants. For example, investigators may give a drug or treatment to participants who have high blood pressure to see whether their blood pressure decreases.

Clinical trials used in drug development are sometimes described by phase. These phases are defined by the Food and Drug Administration (FDA).

Note: Some people who are not eligible to participate in a clinical trial may be able to get experimental drugs or devices outside of a clinical trial through an Expanded Access Program.

Observational Studies

In an observational study, investigators assess health outcomes in groups of participants according to a protocol or research plan. Participants may receive interventions, which can include medical products, such as drugs or devices, or procedures as part of their routine medical care, but participants are not assigned to specific interventions by the investigator (as in a clinical trial). For example, investigators may observe a group of older adults to learn more about the effects of different lifestyles on cardiac health.

New therapies, including medications, medical devices and surgical procedures, are evaluated in research studies known as clinical trials. Often these new therapies are investigational, which means they are not yet approved by the U.S. Food and Drug Administration for general use. Participation in clinical trials offers the potential for new treatment options and allows patients to participate with researchers in driving the discovery of effective therapies for epilepsy. However, there are always risks involved, some known and possibly some that are unknowns, and patients should consult with their physicians in considering the appropriateness of a clinical trial for their particular situation. Clinical trials are done under the supervision of the FDA.

If you are interested in participating in a clinical trial, information can be obtained from the National Institute of Neurological Disorders and Stroke in Bethesda, Maryland as well as many pharmaceutical, biotech and medical device companies, universities and other organizations. Epilepsy.com also provides an integrated listing of ongoing clinical trials provided to CenterWatch or epilepsy.com directly in our Research Studies Directory.

Source:  Epilepsy Foundation of America

Please connect with Epilepsy Foundation of Southeast Tennessee if you have any questions at all.