Dear friends,
Simply put, thank you. Everything we accomplished this year – each cutting-edge project funded, every educational resource developed, all of the inspiring community events held – was made possible by you.
There are significant headwinds facing the entire medical research community, but before I share more about that with you, I’d love for us to take a moment to celebrate what we’ve accomplished together this year—as a community and as an organization. Some highlights in this report include:
- The convening of a successful SUDEP Risk Assessment and Prevention workshop and institution of a new team science SUDEP grant to further progress practical risk assessment tools
- The advancement of CURE Epilepsy-funded drug repurposing science to the brink of clinical trials in people with acquired epilepsy
- The launch of our Community Enrichment Program in partnership with UCB and the addition of an amazing woman living with epilepsy to our staff
- The reintroduction of the National Plan for Epilepsy to Congress by a broad coalition of nonprofit organizations followed by coordinated, powerful government advocacy visits
We hope you take pride in all that you’ve enabled us to do! We are especially grateful now, given the challenges that lie ahead.
We have been disheartened by the news of stalled NIH grants and dramatic proposed funding cuts over the past months and have deep concerns about what that means for our progress towards cures. In our many conversations with university researchers, we continue to hear that those most affected by the uncertainty and change are early-career investigators. Universities are downsizing or eliminating PhD programs, leaving people to look for jobs abroad or abandon research careers altogether. The next generation of scientists will help get us to new treatments and cures, and we must invest in and sustain this critical bench of researchers.
CURE Epilepsy has a unique role to play in the epilepsy research ecosystem. Our funding often acts as seed money, helping investigators test bold ideas and gather the data they need to get larger government grants. The proposed budget cuts the NIH by 40%, meaning that promising research will be left unfunded. We have always been a nimble and agile organization, able to flex as times change. As a first step in protecting scientific progress, our board has approved a plan to fund targeted bridge grants for research at risk due to shrinking NIH budgets, and we hope to share more with you in the coming months.
Advocating for Epilepsy Research
Over the past year we visited Capitol Hill several times to advocate for increased federal funding of epilepsy research, meeting with key legislators. We joined other advocacy organizations at the National Epilepsy Walk on the National Mall and added our name to sign-on letters. We attended innumerable meetings as leaders on The National Plan for Epilepsy Committee (NPEC), the Epilepsy Leadership Council (ELC), and many other coalitions. Sustained collaboration across the epilepsy space will be key to the continued progress of epilepsy research.
Advocating for Epilepsy ResearchThere is a saying that crisis can be clarifying. Recently we’ve been powerfully reminded why our mission matters more than ever. The compassion and generosity of our community —and the strength of our united voices—have never been more evident. While the consequences of recent federal actions are deeply concerning, I remain confident in our vision, our collective power, and our ability to drive toward cures. The epilepsy field has some of the most dedicated researchers, clinicians, parents, and advocacy groups out there, and we advance forward with a common goal.
Thank you for your commitment to CURE Epilepsy. Thank you for your generosity, your hope, and your action. While the future of federally-funded biomedical research is unclear, I truly believe that, with the unwavering support of our committed and resilient community, we have what it takes to meet the moment. Together, we can preserve yesterday’s progress and fuel tomorrow’s discoveries.
With gratitude,
Beth Lewin Dean
Explore the 2024 CURE Epilepsy Report
