When 2009 got under way, the optimism and confidence about our economic future that prevailed just a year ago has given way to anxious concern and uncertainty. As spring and summer emerge from winter, the economic downturn will play out, and we will again see better conditions. But the more than 1 million people with epilepsy uncontrolled by available therapies have been frozen in a winter marked by uncertainty for more than three decades. New therapies working their way through the pipeline offer the promise of seizure control without unacceptable side-effects but only with continued support and nurturing. With financial markets in turmoil and financing hard to come by, the opportunity and need to help those living with epilepsy by supporting promising new therapies as a friend of the Epilepsy Therapy Project has never been greater.

That’s why we remain deeply committed to helping scientists translate innovative ideas from the laboratory to people with epilepsy. We are the ONLY national nonprofit epilepsy organization focused on accelerating the development of new therapies so they reach people with epilepsy in the near future. We firmly believe that people suffering from seizure disorders that impair their lives will benefit from our efforts, which is why we concentrate our resources on making a difference today.

Following are recent highlights of how ETP is moving towards our goal: Freedom from Seizures (and side effects):

New Therapy Development

That’s our name, and that’s where our Board, advisors and I spend significant energy and time working with start-up companies and investors to bring them together. ETP does not have the resources to fund every great idea, but we can knowledgably serve as a “match-maker” to bring innovators to funding. Every few weeks I learn of another new company that has a molecule with potential anti-seizure properties, or a technology that could detect or stop seizures. With support from our Board, I follow every lead to learn about the background of the company, their understanding of epilepsy field, patent protection and access to seed funding. This helps guide the advice we constantly impart on basic research, clinical strategy and resources to support the fastest and safest path to helping people with epilepsy.

An ETP Success Story

We proudly announce the successful milestone for ganaxolone, a new epilepsy therapy. ETP was an early supporter of Marinus Pharmaceuticals, Inc., providing seed funds and introductions that helped the company engage venture capital groups to provide the $30 million needed to reach this stage.

Our seed funding is an example of ETP’s venture philanthropy program: Our goal is to assist start-up companies to move to the next step leading toward a new therapy for epilepsy. Since inception, ETP has provided 33 grants for specific, short-term project, one matching grant, and three seed-stage investments to support start-up companies. We can do more with more donations!

We support new therapy development by providing advice throughout the stages of clinical development, explaining the best approaches to clinical trials and understand the treatment outcomes needed by people with epilepsy: seizure control with few side effects. The new emphasis on personalized medicine and comparative effectiveness of treatments is a welcome advancement in the standard approach to therapy development. I am particularly pleased to see this because it draws on my many years of experience in health outcomes research, including assessments of quality-of-life, seizure severity, and treatment satisfaction. These are values for patients that are now being recognized by the Food and Drug Administration (FDA) as part of new therapy approval.

What’s Next?

Yes, we are making headway. But we can’t do this alone - we need your donations this year more than ever to maintain the momentum. With more support, we can move at a faster pace. We also appreciate your thoughts and ideas on how you may prefer to designate or structure a gift toward a particular program.

People with epilepsy can’t wait and often can’t stop having seizures and living with personal and physical losses. We also cannot afford to let a visionary developer stop working on epilepsy therapies for lack of support. This is our responsibility and will be to our advantage when better treatments become available.

Wishing everyone freedom from seizures,

Joyce Cramer
President, Epilepsy Therapy Project