Second long day of science–many of our favorite scientists, advisors, reviewers, and grantees are gathered here in Bethesda to really focus and brainstorm on advancing NIH efforts to find cures and truly help patients. Great new ideas and energy!  A few of my favorite advocates, too!

CURE grantee and former SAB member Helen Scharfman, PhD

Michael Wong, MD, PhD; Doug Coulter, PhD; Shlomo Shinnar, MD; and Frances Jensen, MD in a break-out group on head injury

Marc Dichter, MD, PhD and NINDS Director Story Landis, PhD

with Seth Wohlberg

with Seth Wohlberg; CURE Scientific Consultant Vicky Whittemore, PhD; Gary Mathern, MD; David Prince, MD; ICE Foundation's Michelle Welborn, PharmD

Today’s the start of the Gordon Research Conference, “Mechanisms of Epilepsy & Neuronal Synchronization: Dynamics, Development and Dysregulation,” taking place on the campus of Colby College in Maine all this week. We’ve been a sponsor of this meeting, which is held every other year, since the very first one in 2006.  If you happen to know about Gordon Conferences, it’s a pretty remarkable thing that the Gordon organizers would agree to lend their name to a disease-specific topic like epilepsy–more often they address very basic scientific topics that aren’t tied to a particular disease, so we are thrilled to support it for the 3rd year and help shed more light on the underlying mechanisms of epilepsy and seizures.

Gordon Conference in Epilepsy 2010 Vice Chair Carolyn Houser, 2010 Chair John Huguenard, and 2006 Chair Kevin Staley

I was at the first two Gordon conferences; they’re set-up like no other science meeting I’ve ever been to!  You eat in the cafeteria, sleep in the dorms, and convene for sessions every morning and evening. In between and afterwards there are scheduled hikes, kayaking trips, lobster bakes, dances… oh yes, and poster sessions too. I know it sounds slightly crazy, but the networking and camaraderie that comes from living together like this for a week, seeing the folks you’re used to seeing at meetings in suits sporting sandals and shorts, the blending of established and young investigators together in this type of setting—it’s all really good stuff!

Plus, because we never miss an opportunity to try to inspire, we take advantage of having so many brilliant minds together in one room to show our most recent CURE video. Many of the basic scientists there, who are working in areas that will directly add to our understanding of epilepsy, don’t really know about the human cost.

CURE friend Tracy Dixon-Salazar, PhD (right) can't believe she's keeping such renowned company! Here she is with Elsa Rossignol, MD of NYU and David Prince, MD of Stanford (2008 and 2009 CURE grantee)

Lots of our grantees, SAB members, and reviewers are there, so we know it’s going to be a great meeting. Vicky Whittemore, our Scientific Consultant, is there as well. She  knows we’ll want a full accounting of all activities–scientific and not–at the end of the week!

CURE Scientific Consultant Vicky Whittemore, PhD at the Gordon Conference!

One of our deadlines for Letters of Intent from potential future CURE grantees was Tuesday. So exciting!  This is what your donations support. This is what we live for at CURE.

So, now we’re in the first stage of the process we’ll go through over the next few months to select the projects we are going to support, beginning January 1, 2011, in our Innovator category and in our brand new Taking Flight category for young investigators.

The Innovator Awards support researchers with new, out-of-the-box ideas about how to conquer this disease. This award is designed to stimulate brand new ideas and approaches, which could lead us toward a cure. And, the Taking Flight Awards are what you all helped to fund during our Mother’s and Father’s Day campaign this spring. Thanks to so many of you, we will be able to give out three awards to bright, promising young scientists–launching them on their own, independent careers and ensuring that we keep the next generation of researchers invested in this area of work.

Program Officer Danielle Davis with Research Program Intern Kara Dentro

CURE Program Officer, Danielle Davis, with the help of Kara Dentro (one of our amazing interns this summer at CURE) have begun to process these now. We received 30 Letters of Intent for our Innovator Awards, and 26 for our Taking Flight Awards. Thanks to all of you for helping to support what we know will be a great and promising new round of research grants!

Under the leadership of CNS (Children’s Neurobiological Solutions), patient advocates, venture capitalists, representatives of government and industry, and scientists gathered for two days this week in McLean, Virginia to brainstorm ways to accelerate new therapies for all kids who suffer from neurological disorders. So many of these children have rare but devastating conditions. And, so many of them also have seizures and epilepsy. As we all know,  so little research is focused on them.

I was thrilled to be included–in part, because I finally got to meet Fia Richmond, the founder of CNS, with whom I’ve had a great email and phone relationship (unfortunately she lives in Santa Barbara, so it may be some time before we get to meet in person again).  Over the years, we’ve shared heartaches, frustrations–and even some successes!

with Fia Richmond

This conference was definitely something she can be proud of.  She brought this group together to explore and lay the groundwork for the establishment of Pediatric Neurological Disorders Centers of Excellence. Lots to think about, and lots of follow-up, but great ideas flowed and next steps were established. I think the advocacy groups in this arena (like CURE) can play a key role in creating registries of patients so that when clinical studies of new therapies are ready, we can help steer the appropriate patients to the appropriate studies.  Patient recruitment is so often why this type of study fails, so it’s exciting to think about ways we can all contribute to their success.