The History of the Epilepsy Therapy Project

Dr. Jacqueline French is the chief innovation and medical officer at the Epilepsy Foundation.

In 2002 Warren Lammert, father of a child with epilepsy and Orrin Devinsky MD, a renowned epileptologist, founded the Epilepsy Therapy Project (ETP). Warren’s motivation derived from his own struggles to find treatment for his daughter Sylvie. It became clear to him that there was a desperate need for new therapies.

Helping People with Epilepsy Now

The Epilepsy Therapy Project differed from many other research-driven non-profits focused on epilepsy, in that the focus was squarely placed on helping people now living with epilepsy, not 20 or 30 years in the future. The founders understood that the randomized controlled trials and other research needed to shepherd a new therapy from the laboratory through development, all the way to FDA approval, costs 50-100 million dollars. One option would have been to raise millions of dollars, and to put that money towards a single shot of success. But there was another way.

The Epilepsy Therapy Project took on a mission of finding the best therapies and devices that were along the path, but needed a push at a critical inflection point, that would increase the likelihood of the drug receiving major investment from pharmaceutical and device companies and other sources. They developed several strategies to push new therapies forward, including:

• A New Therapies Commercialization Grant for academics or start-up companies
• A biannual “Pipeline” meeting, in which companies could update the community and investors on their products in development
• The Epilepsy Foundation Shark Tank, an annual contest for entrepreneurs who pitch their ideas for commercialization of products that might improve the lives of people with epilepsy

Epilepsy Foundation and ETP: Stronger Together

In October of 2012, inspired by the Institute of Medicine report’s suggestion that the two groups would be stronger together, the Epilepsy Foundation merged with ETP. The original spirit and mission of ETP is still at the core of the research agenda that is now being pursued at the Epilepsy Foundation. Over the years, the methods used by ETP (and now the Epilepsy Foundation) have been shown to be very successful.

Investments of one kind or another by ETP/Epilepsy Foundation have been contributory in bringing a number of novel therapies and devices to the “finish line” of FDA approval, including the Empatica Embrace, a device that can detect convulsive seizures and alert caregivers, and Epidiolex^®, the first drug approved for treatment of Dravet syndrome, to name a few.

Moreover, during the years from 2002 to 2020 the pipeline of new therapies and devices has expanded substantially. The Epilepsy Foundation Pipeline Conference has ensured that there are open lines of communication between the drug and device developers, the epilepsy scientific community, and patients for whom the products are being developed. The work of the Epilepsy Therapy Project continues within the Epilepsy Foundation and will ensure that the best therapies are brought forward as rapidly and efficiently as possible.