Just in time for the March 26th international epilepsy awareness raising Purple Day 2024, there was a flurry of stories in late March about successful fundraising efforts for epilepsy assistance and research. MacKenzie Scott’s Yield Giving’s request for proposals awarded $2 million to the Epilepsy Foundation of Texas. Based in Houston, this organization helps Texans with epilepsy overcome its challenges and furthers efforts to advance new therapies that stop seizures and find cures. A grant writer for over 25 years, I am in awe of Epilepsy Foundation of Texas. The Yield Giving’s proposal guid ..read more

Purple has been associated with epilepsy since the creation of Purple Day in 2008, established by eight-year-old Cassidy Megan. From Canada, Cassidy has epilepsy and wanted to raise awareness about it. She chose purple because lavender is recognized as the international flower of epilepsy.  Just in time for Purple Day 2024, which is March 26th, Florida made headlines this month with an inspiring update on the state’s epilepsy-funding front. Apparently, this year Governor DeSantis and both legislative chambers included recurring funding in their budgets that would expand and stabilize epi ..read more

Monday, February 12th is International Epilepsy Day, an annual awareness-raising initiative. The global event is jointly organized by the International Bureau for Epilepsy and the International League Against Epilepsy and observed on the second Monday of February. Just in time for this global epilepsy education extravaganza, the National Association of Epilepsy Centers (NAEC) just released updated guidelines that outline the services and resources Epilepsy Centers should provide to improve quality of care for people whose epilepsy is not well-controlled. The 2023 ..read more

Access to anti-seizure medications, or ASM’s is a longstanding issue in underdeveloped countries, where resources are scarce and public health officials must prioritize contagious diseases. I previously blogged about an East Ugandan study, which found that 75% of Ugandan children with epilepsy were not treated with medication, because it wasn’t available.  While horrifying, that statistic wasn’t shocking. The number left me feeling grateful and privileged to live in a country where I can access and afford my anti-seizure medications. This month, I learned that the United Kingdom is exper ..read more

There were multiple stories this month about advanced technology’s impact on successful epilepsy treatments. The story that screamed out to me was about nineteen-year-old Gabi Sable, from Pennsylvania, who was diagnosed with epilepsy at age 11. Like myself, Gabi lost awareness when she had seizures. She also faced stigmatization, recounting stories of classmates’ parents asking her school’s officials to keep their children away from Gabi. Apparently, her peers got scared when they witnessed a seizure, and secluding their children from Gabi seemed like a solution. Gabi’s doctors couldn’t get h ..read more

Hear ye. Good news about genetic testing for epilepsy this month. A new study out of Stanford University addresses the powerful impact genetic testing can have on treating people with epilepsy of unknown causes. Led by neurologist Dr. Yi Li, the Stanford investigators conducted genetic testing on 286 adults and found pathogenic genetic variants in over 40% of them. In September I blogged about an Australian study that used cutting edge rapid genome sequencing to test babies’ DNA and identify changes that can cause epilepsy. Thanks to studies like this one, genetic testing has become standard ..read more

Earlier this month, my blog acknowledged Epilepsy Awareness Month by showcasing some Epilepsy Warriors from around the country who raise money and awareness about the issue. The abundance of this month’s epilepsy-focused stories underscores the Epilepsy Warriors’ efforts and demonstrates the need for increased epilepsy research funding. Every November, several states, cities, and towns officially declare November as Epilepsy Awareness month in their regions. This year’s locales include Wisconsin , where the Epilepsy Foundation of Wisconsin has organized a Walk to End Epilepsy  every Nove ..read more

In 2003, Congress formally recognized November as Epilepsy Awareness Month. There are dozens of epilepsy-focused nonprofit organizations across the country, including 50 chapters of the Epilepsy Foundation, and many others worldwide. Every November I’m uplifted by the stirring stories I find about people dedicating their time and hearts to raise money for epilepsy awareness/research activities. Only a third of the way into the month, and there are already dozens of happenings posted online, with many more to come. Look for the identifying purple swag—ribbons, tee shirts, and buttons—Epilepsy ..read more

October is here: Time to indulge in pumpkin spiced delicacies, Halloween decorations, and crisp autumn days. On the more serious side, October is also an opportunity for raising awareness about the risks of Sudden Unexpected Death in Epilepsy, or SUDEP.SUDEP refers to deaths in people with epilepsy that are not due to injury, drowning, or other known causes.  So, a person who has a fatal accident while doing something during a seizure like biking does not count as a SUDEP death.  According to the World Health Organization, over 50 million people worldwide have epilepsy, and research ..read more

Unfortunately, the answer to this question has a huge impact on the quality of care and access to medical resources. I knew that already, but the message was reinforced when I read Daniel DelBianco’s story this month. Daniel DelBianco is a 28-year-old man from suburban Vancouver, Canada. I’ve never met Daniel, but after reading his story online, I felt such an empathetic kinship with his situation that I must share it here. Like me, Daniel is one of over 15 million people around the world whose epileptic seizures cannot be controlled by anti-seizure medications (ASM’s). Another commonality: D ..read more