Q: What was the motivation for the recent merger of the Epilepsy Foundation with the Epilepsy Therapy Project (ETP)?
Our motivation in coming together was to more effectively leverage our resources and gain critical scale and energy to accelerate new therapies and improve the lives of people with epilepsy. By combining the two leading websites for people with epilepsy, we saw an opportunity to build together a new unified site with improved functionality and content and save resources. Similarly, we saw an opportunity to build a stronger national brand and awareness of our mission working together as one organization.
Supporters including the Milken Family Foundation and outside observers including the Institute of Medicine encouraged us down this path. And we were fortunate to be able to build on a decade long partnership we had built around the funding of new therapies in a timeframe that matters for people living with epilepsy. Personally, we and our families have lived with epilepsy for many years and understand all to well the consequences of uncontrolled seizures and side-effects. We were driven to increase our efficiency and impact and recognized that a merger could allow us to move faster towards our goals.
Q: What are the challenges in epilepsy disease research that you feel the Foundation, now with the addition of ETP, can help address?
Epilepsy, characterized by recurring seizures, is not one disease but instead multiple disorders that affect people in many different ways. Over the past decade, the public perception has been that epilepsy is not well understood and is relatively easily controlled. That simply is not the case. The reality is that approximately 1 million of the 3 million Americans diagnosed with epilepsy suffer from relentless intractable seizures that are not currently controlled with available therapies. And half of those diagnosed live with debilitating physical side effects from treatments, including memory and attention deficits as well as severe fatigue and mood changes.
Together, the Epilepsy Foundation and the Epilepsy Therapy Project have funded 61 of the 120+ new drugs, devices and diagnostics in the pipeline for epilepsy. But the dollars we put to work in supporting new therapies are a fraction of those raised by like organizations in other disease areas. With greater scale and resources we can have greater impact in accelerating new therapies forward and hope to expand the depth of funding we can provide to individual projects and expand our support out of preclinical support and further into sponsorship of proof of principal studies.
Q: Can you tell us a bit about the Foundation's research strategies and how they help overcome the barriers you've identified?
There are three principal elements to our research and innovation strategy. The first is supporting new therapy projects both in academic and commercial settings that can make a difference for people with epilepsy in a timeframe that matters. We do this through our New Therapy Grants program and through our Shark Tank Competition which is held at our annual Epilepsy Pipeline Conference. We are now experimenting with new funding platforms to fund research and new therapies using crowd funding. We have established partnerships with Poliwogg and Indiegogo to take some of these ideas that we have funded at an early stage through our New Therapy Grants or Shark Tank and move them along through the more expensive stages of proof of concept and clinical development necessary to get them to people with epilepsy.
The second element involves investments in platforms which can accelerate the entire ecosystem of therapy development. These include conferences and meetings such as our annual Pipeline conference and Sudep Institute, support for the development of the Epilepsy Study Consortium, clinical trial recruitment and participation, and investments in new preclinical models of discovery. Finally we invest in human capital through our fellowship program designed to encourage new innovators and researchers to choose epilepsy as a focus for their careers, an area of investment that has enjoyed strong support from the Milken Family Foundation over the past three decades.
Q: What do you consider the Foundation's greatest accomplishments to date?
Again, we are proud to have provided support to roughly half the 120 new drugs, devices and diagnostics in the pipeline. We are most proud that four of these (all devices) have crossed the finish line and gotten to market to help people with epilepsy in the last four years: the Visualase MR guided laser system for epilepsy surgery; the SmartWatch seizure detection and caregiver notification device; Sami Movement monitor to help detect and record movement during sleep in conjunction with an iPhone, and most recently, the non-invasive NeuroSigma stimulator for control of seizures. The NeuroSigma device has been approved in Europe but not in the US. In the US, the regulatory approval path for devices currently overweights the risk against the benefits of innovation and underweights the burden and human cost of the status quo. We have advocated with FDA on behalf of important new therapies undergoing review and most recently have addressed this challenge by introducing legislation to require the Drug Enforcement Agency to move faster toward bringing FDA approved new therapies to the public.
The impact of our longstanding investment in innovative researchers too is another key accomplishment of the Foundation. We have provided fellowships to 1,500 individuals over the last 30 years – individuals who have made and continue to make remarkable and important contributions to research, understanding of epilepsy and innovation in therapy.
Q: What are your top research goals over the next year and what will it take to reach those goals?
While there has been some progress in changing how we care for people with epilepsy, progress has been too slow and despite our community's best efforts, far too many individuals still face the unrelenting effects of uncontrolled seizures. Our research goals this year are driven by the understanding that individuals with severe epilepsy cannot continue to wait for the help they desperately need. One example of a difficult to treat epilepsy is Dravet Syndrome, an epilepsy syndrome that occurs in childhood that impacts children with daily waves of seizures and cognitive impairment. This year, the Epilepsy Foundation is establishing a collaboration between the pharmaceutical industry, biotech, and the Epilepsy Foundation focused on targeting receptors that cause Dravet Syndrome. Too often individuals and families spend years trying to find the right treatment for their seizures. We imagine in the future that an individual diagnosed with Dravet Syndrome will be able to know with a simple blood test, which medicines will work for them.
In addition, we believe our recent partnerships with Poliwogg and Indiegogo can help bring new avenues of funding for innovative ideas and can take those ideas further down the development continuum and accelerate their timeline to making a difference for people living with epilepsy.
We look forward to working together to collaborating with leaders in our community who are striving to improve the care and therapies available to our children and the millions of other individuals around the world living with seizures, side effects, and all of the complications and challenges of epilepsy. We applaud FasterCures and the Milken Institute for their steadfast leadership and support for improving lives, and we count it a privilege to be a partner in the mission of finding faster cures.