Greetings Epilepsy Community,
I hope that you were able to watch our 3rd annual Unite to CURE Epilepsy virtual event which premiered last week. We were honored to have had epilepsy community members tune in from all over the US and around the world starting from our home base of Chicago, Illinois to Santa Monica, California, and even as far as Beirut, Lebanon, and Tokyo. We are thrilled to announce that we have raised $150,200 to date through your contributions to Unite to CURE Epilepsy. Those funds will help us continue to fund critical research toward finding a cure.
As we continue our search for a cure, every dollar counts, and thanks to the generosity of the Ann G. and James B. Ritchey Foundation, all gifts through Sunday, October 16 will be matched up to $25,000! If you haven’t yet made your gift or you want to give again to make your donation go even further, please donate here by Sunday, October 16!
Because of supporters like yourself, CURE Epilepsy has been funding critically needed research for almost a quarter of a century. One area of research that we have focused on is Sudden Unexpected Death in Epilepsy (SUDEP). We have funded over $5.5 million in grants studying SUDEP, making us the leading private funder of research in this area. Wednesday, October 19 is SUDEP Action Day, a day when the epilepsy community comes together to promote awareness of SUDEP, educate on the risk factors associated with SUDEP, and drive conversations that will increase SUDEP prevention. It also affords us an opportunity to remember those that we have lost and to comfort the bereaved within our community. SUDEP is one of the most devastating but least discussed consequences of epilepsy. Be sure to follow us on social media to see all of the content and share it with your friends and family during the entire week of October 17th in honor of SUDEP Action Day.
Through research there is hope.
In this CURE Epilepsy Update, please find information on:
- Thank You for Your Support of Unite to CURE Epilepsy 2022
- Your Donation Will Go Twice as Far Thanks to a Donation Match!
- SUDEP Action Day
- CURE Epilepsy Discovery: Brain Aginghttps://give.cureepilepsy.org/event/unite-to-cure-epilepsy-2022/e409840 in Childhood-Onset Epilepsy: A Long-Term, Population-Based Study
- Free Webinars (Previous and Upcoming)!
- CURE Epilepsy CARES Events
- Epilepsy Awareness Day at Disneyland
- SUDEP Webinar Presented by PAME
- What’s New from the Seizing Life® Podcast
- The CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
Thank You for Your Support of Unite to CURE Epilepsy 2022
Thank you to everyone who joined us for CURE Epilepsy 2022. We’ve already raised over $150,200 and thanks to a generous donor, all gifts made before Sunday, October 16 will be matched up to $25,000. And remember, if you missed the virtual event, you can still watch it online!
Your Donation Will Go Twice as Far Thanks to a Donation Match!
The Ann G. and James B. Ritchey Foundation is doubling the impact of your donation! All donations made through Sunday, October 16 will be matched up to $25,000. Whatever amount you are able to give, it will be matched! $5 becomes $10, $25 becomes $50, $500 becomes $1,000! Donate today to make the most of your gift.
SUDEP Action Day
Wednesday, October 19 is SUDEP Action Day. It is a day for the international epilepsy community to raise awareness about SUDEP (Sudden Unexpected Death in Epilepsy), which occurs when a seemingly healthy person with epilepsy dies for no known or obvious reason. Join CURE Epilepsy throughout the week of October 17 to learn about SUDEP, SUDEP risks, and new SUDEP research. Please also encourage your friends and families to share this information. We have to #talkSUDEPnow to raise awareness about SUDEP and educate families to reduce the SUDEP risk for a loved one living with epilepsy.
CURE Epilepsy Discovery: Brain Aging in Childhood-Onset Epilepsy: A Long-Term, Population-Based Study
Little is known about how the brain and brain function change with aging in older people with epilepsy, particularly among those with childhood-onset epilepsy (COE). CURE Epilepsy funded Dr. Bruce Hermann (University of Wisconsin, United States) and Dr. Matti Sillanpää (University of Turku, Finland) to study the intersection of epilepsy and aging in a unique population-based group of people with epilepsy . This group of people, whom Dr. Sillanpää had been following over decades, consists of persons diagnosed with COE when they were less than 16 years old (4.6 years of age on average). If confirmed with a larger group of people, these data could impact epilepsy treatment and our understanding of how epilepsy and aging overlap.
Free Webinars (Previous and Upcoming!)
Register Now for Today’s Webinar: Advanced Imaging in Epilepsy: How MEG Can Assist in Surgery
In this free webinar, held today from 1-2 pm CT, we will discuss magnetoencephalography (MEG) which is the newest, most advanced technology that can be used to help close the gap between the roughly 4,000 epilepsy surgeries performed each year and the estimated 100,000-200,000 people with epilepsy who may benefit from epilepsy surgery.
MEG can pinpoint the source of abnormal brain activity and seizures, is painless, safe, and requires only 1.5-2 hours to perform. Ultimately, MEG can help surgeons decide whether a patient should pursue surgery. The use of MEG may allow more patients to be identified for surgery, and potentially lead to greatly reduced or no seizures.
Miss Our September Webinar The Effects of Exercise on Epilepsy? You Have Another Chance!
If you missed our September webinar, you can now watch the recording or read the transcript on our website! September’s free webinar explains the difference between exercise and physical activity, summarizes the health issues faced by many people with epilepsy, and discusses who may benefit from physical activity. You will also hear the current consensus among medical professionals on the safety of different types of physical activity and exercise for people with epilepsy. Finally, viewers will learn practical tips for how people living with epilepsy can safely engage in physical activity.
Check out all of our previous and upcoming webinars here.
CURE Epilepsy Cares Events
We were thrilled to visit Cincinnati for a CURE Epilepsy CARES (Conversations About Research in Epilepsy and Seizures) event last month. This event brought together patients, families, medical professionals, researchers, and others touched by epilepsy to engage in conversation and have their questions about cutting-edge research and epilepsy treatments answered by clinicians. If you weren’t able to attend the event live, you can watch a recording here. Our next CURE Epilepsy CARES event will be held in Baltimore this November. Visit our website to learn more!
Epilepsy Awareness Day at Disneyland
CURE Epilepsy is excited to join the organizers of Epilepsy Awareness Day at Disneyland (EADDL) on October 31 – November 2. This event includes a free 2-day expo where attendees can learn from some of the leading epilepsy professionals from around the US about the latest research, technological advancements, epilepsy services available to those living with epilepsy and their loved ones, and much more. The event also features an optional third day at Disneyland Park in California where thousands of attendees celebrate Epilepsy Awareness Month.
Join CURE Epilepsy on Tuesday, November 1, when we film an upcoming episode of Seizing Life® with host Kelly Cervantes, live! Please also stop by our booth to learn more about us and share your personal epilepsy message more broadly with the community.
SUDEP Webinar Presented by PAME
Join our friends at PAME (Partners Against Mortality in Epilepsy) for their upcoming webinar, SUDEP Communication: Understanding the caregiver perspective and developing a SUDEP conversation guide. This webinar will feature Monica Lemmon, MD, Assistant Professor of Pediatrics within the Division of Pediatric Neurology at Duke University, speaking about the development of a SUDEP conversation guide. This free webinar will take place Tuesday, October 11 from 12-1 pm ET.
What’s New from the Seizing Life® Podcast
Working to Overcome Disparities in Epilepsy Care in the Hispanic Community
Examine the challenges faced by minority groups in general and the Hispanic community in particular in accessing quality epilepsy care and learn about a program aimed at addressing these issues.
Celebrating 100 Episodes: Community, Impact, and Hope
On Seizing Life’s 100th episode, host Kelly Cervantes is interviewed by David Axelrod about turning her family’s epilepsy experience into advocacy and finding hope in the research funded by CURE Epilepsy.
Watch these and all of our upcoming Seizing Life episodes here.
The CURE Epilepsy Store
Behind on back-to-school shopping? Purchases from the CURE Epilepsy Store can help spread awareness and get you those last-minute necessities like water bottles and t-shirts!
Please mark your calendar for the following key dates in the epilepsy community:
- October 19 – SUDEP Action Day
- October 31-November 2 – Epilepsy Awareness Day at Disneyland
- November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
- November 1-30 – Epilepsy Awareness Month
- December 1-7 – Infantile Spasms Awareness Week
- January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
- February 13, 2023 – International Epilepsy Awareness Day
- March 26, 2023 – Purple Day
1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.