As we shift gears and move faster and further into 2013, our Epilepsy Foundation CEO Phil Gattone and I want to thank you for your overwhelmingly positive response to our strategic merger with EF. As you know, ETP collaborated closely over the years with other leading epilepsy organizations and in particular the Epilepsy Foundation. Our merger is the culmination of a very successful partnership that has funded new therapies for nearly a decade. I am thrilled to share with you an overview of what has been achieved in the first weeks of 2013 as well as to highlight a few key dates in the coming months.
- The Epilepsy Therapy Project and the Epilepsy Foundation merger became final on January 1.
- Our now single organization, known as the Epilepsy Foundation, allows us to execute with greater economy and have even greater impact. The Epilepsy Therapy Project will continue to work to advance new therapies in a time frame that matters under the EF umbrella, ETP’s work and brand continue. ETP operated as a lean organization, a nonprofit with a business like focus in putting dollars to work where they can have the greatest impact. In joining with EF we are able to bring an even greater portion of every dollar raised directly to new therapies. By coming together, ETP and EF harness greater critical mass, energy and credibility both to our ETP mission of acceleration of new therapies and to the broad EF mission to improve the lives of people with epilepsy.
- The mission of the new Foundation is to stop seizures and SUDEP, accelerate new treatments and find a cure for epilepsy while helping individuals and families overcome the challenges created by epilepsy. We accomplish these goals in three primary ways:
- The first is through education. We connect people with epilepsy, their families, loved ones, care providers, researchers and other important professionals to the most comprehensive information available on key developments, best practices as well as critical news from the epilepsy pipeline. In fact, the epilepsy pipeline “lives” on our robust ETP website,epilepsy.com. Epilepsy.com will continue as a valuable resource for the new Foundation, its Affiliates and the broader community of people with epilepsy. The premier portal globally in the field of epilepsy, our site soon will serve more than 500,000 unique visitors monthly, with page views of more than one million. This complements the historic support each of the EF national affiliates provides to children and families in their individual communities. These 47 dedicated affiliates provide programs and services at no cost to people living with epilepsy and their loved ones.
- We accelerate new therapies and advance a cure by funding the best ideas we can find anywhere in the world. In 2012 three of our EF/ETP funded projects made it to patients: the Visualase MR guided laser system for epilepsy surgery; the SmartWatch seizure detection and caregivers notification device; and most recently, the non-invasive NeuroSigma eTNS stimulator for control of seizures was approved in Europe. We remain fully committed to ETP’s driving principle of delivering new therapies in a timeframe that matters.
- Advocacy is the third pillar of our efforts because epilepsy is broadly underfunded and widely misunderstood. All of our loved ones deserve so much more than this unacceptable status quo. Our brand of advocacy is passionate and impatient and keenly focused on changing the future for people with epilepsy. This means increased public funding, more public private and strategic partnerships, improved awareness and understanding – now.
As the Chairman of Faster Cures Michael Milken points out, “Across all diseases and life-threatening conditions, patient-focused organizations – and patients themselves – are leading the way toward better treatments.” “The merged resources of the Epilepsy Therapy Project and the Epilepsy Foundation will give individuals living with the condition – and their families – an even stronger advocate and partner working to accelerate research and discovery.” I’m including a copy of the complete press release which included Mike’s comments.
A few of the highlights of our 2013 calendar thus far include:
- The 64 Shark Tank II applications received as of the February 1st deadline. This is more than a 50% increase over the 43 applications received for last year’s first Shark Tank competition. We are excited that this $100,000 competition will take place during the AEDD Conference in Florida in May.
- February 25 inaugural meeting of the newly formed EF SUDEP Institute;
- February 28 deadline for letters of intent for the Spring ETP New Therapy Grant Awards Cycle:
- March 15 Team ETP will participate for the first time in the Los Angeles Marathon adding a west coast component to the Marine Corps, New York, Chicago and Philadelphia marathons which follow this fall;
- April 20 is the National Epilepsy Walk in Washington, DC;
- May 13-15 is when our own -- and currently the President of the American Epilepsy Society – Dr. Jackie French leads the AEDD Trials XII Conference in Florida which for the first time will also include the Shark Tank II competition.
Our merger is an exceptional opportunity. It is a demonstration of our deep commitment to making a real difference in the lives of people living with epilepsy today. We are excited to be bringing our vital mission and unique approach to a wider audience in the epilepsy community and beyond and to achieving greater impact. Together we are stronger.
Chairman and Co-Founder
Epilepsy Therapy Project