I hope my blog posts and forthcoming book, Seizing Control bring the reality of epilepsy to life for readers. I ask that readers join me in channeling that empathetic awareness into action by donating to epilepsy research through one of the three organizations listed below. These were suggested to me by Dr. Steven Schachter, Chief Academic Officer and program leader of neurotechnology at the Consortia for Improving Medicine with Innovation & Technology (CIMIT). Dr. Schachter is also a neurology professor at Harvard Medical School and has served as a past chair of the Epilepsy Foundation’s Professional Advisory Board and as a member of their Board of Directors. In addition, Dr. Schachter edited a series of books that were collections of patients’ descriptive experiences of seizures, Brainstorms: Epilepsy in Our Words. He was also my first Boston-based neurologist, so I have experienced his patient-centered caring approach. Given his background, I feel confident encouraging readers to support one of the following three epilepsy research organizations:
- American Epilepsy Society Support Epilepsy Research and Education (aesnet.org)
- Citizens United for Research in Epilepsy Donate – CURE Epilepsy
- Epilepsy Foundation of America Ways to Give | Epilepsy Foundation
As I’ve previously blogged, epilepsy research is disparately funded compared to other neurological disorders. The 2022 National Institute of Health (NIH) research allocations were $212 million for epilepsy and $249 million for Parkinson’s disease. Considering that 3.4 million Americans have epilepsy, about one million have Parkinson’s, the funding levels are disproportionate. For every American with epilepsy, the NIH invests $62 into research. That number is $249 for Americans with Parkinson’s. Epilepsy is the neglected stepsister disease, making new medications and technology less accessible to patients.
Since my spring 2022 blog launch, I’ve read about multiple new promising technologies being developed with the goal of treating refractory epilepsy. Many of them are specifically aimed at simplifying brain surgery techniques, including MRI-guided minimally invasive surgery techniques, the use of stereo-electroencephalography (SEEG for short), which uses electrodes to carefully map the brain as part of brain surgery preparation, and Responsive Neurostimulation (RNS), which uses a smart device that’s implanted under the scalp, monitors brain activity, and shortens or prevents seizures by emitting electrical currents to the brain when it detects seizure activity. My initial reaction is jealousy – I’m envious of the opportunities available to patients with uncontrollable seizures now, compared to when I had surgery in 2014.
Then I recall epilepsy’s stepsister status, and I’m ticked off. These high-tech surgical methods could have been around sooner. But they weren’t because epilepsy is not a priority in the neurological disorder research world. Another obstacle is that these new technologies are typically in their infancy phases. Patients experiencing intractable seizures are unlikely to hear about them unless their neurologist carefully follows epilepsy research updates. Without expanded resources, it will probably be years before the technologies are well known among neurology practitioners and easily accessible.
Which brings me back to Dr. Schachter’s recommended research organizations above. Please take a moment to click on one of the links to support epilepsy research. Your donation will improve access to cutting edge epilepsy treatments, resulting in increased seizure-freedom for those with refractory epilepsy.