Epilepsy Therapy Project
The Epilepsy Therapy Project (ETP) exists to bring effective, safe and tolerable therapies to people living with epilepsy and seizures. It is not acceptable that still today, 1/3 of those with epilepsy, some one million kids and adults in the United States alone, live with seizures uncontrolled by any available therapy and that the existing treatments too often bring with them debilitating side effects. And it is not acceptable that the problem of epilepsy is not discussed and that epilepsy research has not attracted a level of philanthropic support commensurate with the unmet medical need. We need to work to continue to bring the spotlight on epilepsy and to rally support for the new therapies needed to stop seizures and unacceptable side effects.
In the early months of 2009 we have won some important victories in the area of epilepsy awareness with a cover story on the unsolved nature of epilepsy appearing in Newsweek magazine featuring ETP Co-founder Dr. Orrin Devinsky, and with a Talk of the Nation interview with Orrin and myself on National Public Radio.
In the area of direct action to advance new therapies, we have seen important progress in the activities of the ETP in 2008 and into the early months of 2009. These include our March 2008 and April 2009 Epilepsy Pipeline conference where we brought together several hundred scientists, entrepreneurs, investors and industry participants involved in new therapy development. Also, in 2008 we funded a number of important grants serving to advance promising therapy projects selected for their potential to impact patients in a timeframe that matters by our scientific and business advisory boards. We also made good progress enhancing the content of our epilepsy.com and epilepsy.com/professionals websites and in particular launched a new innovation center (epilepsy.com/innovation) to support scientists, entrepreneurs and investors.
As an organization, I am happy to say that with support and leadership from our President Joyce Cramer, and our Executive Director Kim Macher, we made strides in board involvement and had a record year relative to financial contributions from our board and from individual contributors. We need to make ongoing progress in our fund raising efforts, but I am gratified with the commitment shown by our board and community against the backdrop of evident economic and financial challenges of the last 18 months.
Support from industry through unrestricted educational grants declined in 2008 and despite the increase in individual support; we had to tighten our budget. I want to thank Joyce, Kim and our web director, Karen Dredske for finding ways to cut our costs and overhead, allowing us to maintain our support for grants and investments in new therapies and our other programmatic activities.
As we look into 2009, we are more than ever determined to make a difference in accelerating the path of new therapy development. And with the ongoing financial challenges facing academic and industry labs and enterprises, our grants, investments and programs are more important than ever.
Thanks to all of you whose efforts and contributions sustain the Epilepsy Therapy Project and work to eliminate seizures and side effects for the millions of people living with epilepsy in our country and around the world.
Chairman and Co-Founder
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