Beginning in 2025, unprecedented changes to the medical research enterprise created a huge need in our research community. In response, we launched a focused fundraising campaign.

Our board, close friends, and industry partners have already committed more than $600,000, enabling us to start making grants to fill critical gaps and keep research progress moving forward. Our goal is to grant $1,250,000 to sustain past grantees across two new grant mechanisms by the end of the year. If you’d like to learn more about this special effort, contact Alysha Biehl at Alysha.Biehl@CUREepilepsy.org.

• $100,000, one year
• Providing essential support to early- career researchers
• Initially focusing on NIH R01 and K grant applicants who have strong but unfunded applications
• Helping recipients strengthen their proposal, generate additional data, and remain competitive when reapplying for federal funding

• $50,000, one year
• Covering urgent, time-sensitive research expenses for investigators whose funded work is threatened by specific policy constraints (e.g., limitations on international collaboration)
• Ensuring high-value research continues uninterrupted during this period of instability

Newborns with hypoxic ischemic encephalopathy (HIE) face devastating seizures, and, unfortunately, many do not respond to available medications. Dr. Shilpa Kadam received a 2022 Robert Withrow Wier Catalyst Award to investigate a novel approach to treating HIE that targets the chloride co‑transporter KCC2; she was able to secure important proof-of-concept data for a novel drug candidate for intractable epilepsy.

Now, four years later, biotech Axonis Therapeutics is translating that academic work into first-in-human clinical studies. This exciting research not only brings hope for babies with HIE but may also open the door to new treatments for difficult-to-manage seizures and restore healthy brain signaling across multiple neurological disorders.

Dr. Bin Gu has secured an NIH R01 grant, enabling larger-scale studies on the biological mechanisms underlying SUDEP. Dr. Gu’s research aims to identify genetic factors that increase vulnerability to SUDEP and physiological warning signs that may precede fatal events.

CURE Epilepsy initially funded this work because of its innovative approach. Rather than relying on a single mouse strain, Dr. Gu studied multiple, genetically diverse strains, reflecting the complexity of epilepsy and SUDEP.

This strategy identified four strains that experienced sudden death after a single seizure, creating powerful new models to study genetic, respiratory, and cardiac triggers of SUDEP. Building on these findings, Dr. Gu’s NIH-funded research will test whether closed-loop stimulation of an area of the brainstem during seizures can prevent SUDEP and further define the underlying cellular mechanisms.

Developmental and epileptic encephalopathies (DEEs) are a group of rare and severe epilepsies that begin early in life and are often resistant to current medications. Individuals with DEEs frequently experience seizures, developmental challenges, and limited treatment options, placing a heavy burden on patients and families.

Lundbeck’s DEEp OCEAN Study is a global Phase 3 clinical trial evaluating LP352 (bexicaserin) as a potential new treatment for people living with DEEs. The company is studying bexicaserin across a myriad of rare epilepsies; some are closely linked to a specific genetic, structural, or metabolic cause and others may have multiple possible causes — or no clear cause at all.

By using a novel trial design, enrollment criteria is open to different types of DEEs, which helps rare communities who may not otherwise have a specific trial to enroll in. Results of the DEEp OCEAN Study are expected at the end of 2026 or beginning of 2027. If successful, it could lead to a meaningful new treatment option for people with DEEs — offering hope for better seizure control, improved quality of life, and fewer side effects.

Harmony Biosciences recently announced open-label extension data from its ongoing Phase 3 ARGUS trial evaluating EPX-100 (clemizole hydrochloride) for the treatment of Dravet syndrome.

The discovery of EPX-100 is rooted in early preclinical work identifying clemizole as a potential antiseizure medication. This line of investigation builds on Dr. Scott Baraban’s 2011 CURE Epilepsy-funded research, which used gene profiling and high-throughput drug screening in a zebrafish model of Dravet syndrome to uncover novel therapeutic candidates in a cost-effective, genetically relevant system. CURE Epilepsy’s early support helped establish an innovative drug discovery pipeline that contributed to identifying clemizole’s potential, ultimately accelerating its translation into clinical development.

These new Phase 3 data represent a meaningful step forward in advancing therapeutic options for individuals with Dravet syndrome and underscore the long-term impact of strategic early research funding.

Age: You must be at least 70½ years old on the date the funds are transferred.

Direct Transfer: The check must be issued directly from your IRA custodian to CURE Epilepsy. If funds hit your personal bank account first, the transaction will be counted as a taxable distribution rather than a qualified charitable distribution (QCD).

Eligible Accounts: Traditional IRAs and Roth IRAs.

No Goods or Services: You cannot receive any goods or services in exchange for the transferred funds.

Reduces Taxable Income: When you bypass your annual gross income, QCDs prevent your donation from bumping you into a higher tax bracket. This can also lower your Medicare Part B and D premiums and reduce the taxability of your Social Security benefits.

Satisfies RMDs: Once you are at least 73 years old, you must take required minimum distributions (RMDs). Your QCD will count toward or entirely satisfy your annual RMD without adding to your taxable income.

Works with Standard Deduction: You do not need to itemize your deductions to get the benefit.