The road ahead is filled with challenges and opportunities.


Dear
Friend,
Earlier this week I returned from the annual American Epilepsy Society (AES) meeting in Los Angeles. It was a jam-packed few days of learning, networking, and community-building for the CURE Epilepsy team that attended. This conference is especially important to me as it creates a space where researchers and advocates build bridges, align on shared goals, and foster innovation. I am excited to share with you some of my key takeaways from the meeting. Here are three themes:


** Partnerships and collaboration matter immensely; working together gets us there faster.
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I attended many sessions where researchers talked about team science and the need to break out of silos that hinder the sharing of knowledge and data. The same is true for those of us working in the nonprofit advocacy world. When we share insights, resources, and connections, we truly move the needle on epilepsy research.

CURE Epilepsy sits on many committees, consortiums, and coalitions, often in a leadership role. At this meeting alone our Chief Scientific Officer Laura Lubbers presented on standardized data collection in Sudden Unexpected Death in Epilepsy (SUDEP) models at the Partners Against Mortality in Epilepsy (PAME ([link removed]) ) meeting, our Marketing Director Dana Vielmetti co-led an Infantile Spasms Action Network (ISAN ([link removed]) ) meeting, and our Research Director Priya Balasubramanian organized a Rare Epilepsy Network (REN ([link removed]) ) luncheon on collaborations to drive research and therapy development in rare epilepsies. We walked away from these collaborative sessions chock full of ideas and innovative ways to work together in 2025.


** Researchers are concerned about funding future research.
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We saw so much promising science presented, especially by passionate young investigators. It was inspiring. However, I had many conversations with researchers, both early-career and tenured, who are extremely worried about the overall funding environment and what that could mean for progress toward cures.

The National Institute of Neurological Disorders and Stroke (NINDS), the largest funder of epilepsy research, is facing potential changes to its structure and an uncertain budget forecast. Impacts on its funding have resulted in a much more challenging environment for researchers to secure grants from NINDS. One of the key grant mechanisms, called an R01, will have a much lower cutoff to determine which applicants’ projects are funded. This change is to account for an anticipated reduction in resources to allocate. One researcher referred to this as “an unmitigated disaster for science and patients.”

This federal funding environment underscores how important CURE Epilepsy’s gap-filling grants are for the scientific community. We must continue to grow our fundraising efforts so we can ensure no good idea goes unfunded and scientists stay in epilepsy research.


** Technological advances are enabling groundbreaking work, but what’s old can also be new again.
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Like all areas of life, epilepsy research is being transformed by artificial intelligence (AI). We heard about exciting advances in the use of AI for everything from predicting response to antiseizure medications in newly diagnosed patients with epilepsy to identifying infantile spasms to predicting surgical outcomes. AI has significant potential to save time and money and shorten diagnostic journeys. Grantees like Dr. Avtar Roopra explained that without technological advances, the work he is doing now would not have been possible five years ago. However, creative thinking around different ways to use existing solutions is also leading to breakthroughs, like with drug repurposing and the reanalysis of old genetic test results as more genes are implicated in epilepsy.

December is one of my favorite months of the year because I am always reinvigorated by the amazing science we see at AES. We look forward to sharing more insights from the 2024 AES Annual Meeting with you on social media over the next several weeks.

Best,

Beth Lewin Dean

Chief Executive Officer

Our mission is to fund breakthrough research that will transform the lives of people with epilepsy as we lead the search for a cure. CURE Epilepsy is a non-profit 501(c)(3) tax-exempt organization. Our tax identification number is 36-4253176.
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