Blog


Sonya Dumanis lores
Sonya Dumanis
Senior Associate, Center for Strategic Philanthropy
Bioscience and Medical Research and Philanthropy and Science
Dr. Sonya Dumanis is a senior associate at the Milken Institute’s Center for Strategic Philanthropy in Washington, D.C. Focused primarily on medical research philanthropy, Dumanis provides individual philanthropists and foundations with comprehensive and objective information related to the state of research for various diseases and key unmet needs impeding scientific progress.
read bio

The Imperative for Funding Epilepsy Research

By: Sonya Dumanis
October 10, 2016
   
   

The Milken Institute Center for Strategic Philanthropy has launched an Epilepsy Giving Smarter Program, informing philanthropists on the state of the science for epilepsy and highlighting impactful philanthropic opportunities ripe for investment. Read our in-depth landscape report outlining promising research efforts and critical funding gaps that need to be filled to advance treatment and care.

One in 26 people in the United States will develop epilepsy during their lifetime, a condition characterized by unprovoked and recurrent seizures. At least 50 million people live with this disorder worldwide, according to the World Health Organization. The manifestation of epilepsy, in terms of seizure type, severity, and age of onset, varies widely among patients. Just like there are many different cancer subtypes and severities that require tailored individualized treatment, epilepsy is beginning to be viewed as having many subtypes. Unfortunately, the biological and clinical profiles of all epilepsy subtypes are not well known. Although these profiles are difficult to elucidate, a focused effort to comprehensively identify and characterize epilepsy subtypes using precision medicine would greatly improve clinicians’ ability to diagnose and treat patients based on their epilepsy type.

Thirty to forty percent of epilepsy patients do not achieve effective seizure control with currently available therapies. Those who do achieve seizure control are often left to contend with severe adverse side effects from epilepsy therapies, comorbid conditions such as depression and anxiety, sleep disorders, learning and memory problems, increased suicide risk, and public misunderstanding and discrimination. If seizures remain uncontrolled, patients often experience lifelong disability. Supporting the expansion or development of accredited epilepsy centers with coordinated medical care teams would substantially improve comprehensive holistic care.

There are no disease-modifying therapies for epilepsy. Current epilepsy medications do not treat the underlying cause of epilepsy, but instead treat seizure, which is a symptom of epilepsy. Knowledge gaps in understanding of the biological underpinnings of epilepsy are currently precluding the field from developing treatments that can correct the abnormal biology that drives the disease. These fundamental knowledge gaps, along with the high cost of clinical trials and competing priorities, have weakened the value proposition for the pharmaceutical industry to invest in the development of new epilepsy therapies that can treat the disease and not only the symptoms. Strategic philanthropic support for basic and translational research to close the aforementioned knowledge gaps could incentivize the industry to pursue novel therapeutic targets.

Epilepsy is underfunded. Compared to other neurological diseases, government funding and nonprofit support has lagged behind. For example, epilepsy is six times more prevalent than Parkinson’s disease, but receives 10 times less funding from nonprofit and government funding sources combined. Additional funding and opportunities to attract young investigators and to encourage collaboration among the different research communities would ensure a sustainable and thriving workforce.

The Milken Institute Center for Strategic Philanthropy has launched an Epilepsy Giving Smarter Program, informing philanthropists on the state of the science for epilepsy and highlighting impactful philanthropic opportunities ripe for investment. Read our in-depth landscape report outlining promising research efforts and critical funding gaps that need to be filled to advance treatment and care.