Greetings Epilepsy Community,
I am so excited to share that this past weekend, thanks to our generous donors and sponsors, CURE Epilepsy raised $3.1 million for epilepsy research at our 25th Anniversary Gala in Chicago. It was wonderful to share an evening with our community of people living with epilepsy, family members and friends, researchers, past and present board members and other volunteers and supporters who have helped to shape CURE Epilepsy over the last 25 years. We also toasted our founder Susan Axelrod, without whom none of our progress would be possible, and awarded our inaugural Founders Award to our first research chair Barb Kelly.
Though we still have a long way to go, epilepsy diagnostics, treatments, and therapies have come incredibly far in the past 25 years, giving hope to so many who were previously left with extremely limited options. Our search is unrelenting, and we remain committed to funding the most innovative science until we reach a world without seizures or side effects. The epilepsy journey can be lonely and isolating, and, especially during this Mental Health Awareness month, the value of this community and the support we give each other cannot be overstated.
With a commitment to inspire hope and deliver impact.
In this CURE Epilepsy Update, please find information on:
- $3.1 Million Raised for Epilepsy Research at CURE Epilepsy’s 25th Anniversary Gala
- May is Mental Health Awareness Month
- Register for Our Webinar: Mental Health and Childhood Epilepsy
- New Resource for the Community: Medication Access
- Join Team CURE Epilepsy for the Marine Corps Marathon (MCM)
- Watch Our Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission
- CURE Epilepsy Discovery: CURE Epilepsy Funds Research to Investigate Mechanisms of Genetic Epilepsies
- What’s New from the Seizing Life® Podcast
- The CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
$3.1 Million Raised for Epilepsy Research at CURE Epilepsy’s 25th Anniversary Gala
Thanks to the generous and committed members of our CURE Epilepsy community, we raised $3.1 million for epilepsy research at our 25th Anniversary Gala in Chicago last weekend. It was an incredible evening celebrating inspiring stories from the community and promising advancements in research. Thank you again to our Host Committee, sponsors, donors, and volunteers. If you would still like to make a gift to help find a cure for epilepsy, you can visit the event page.
May is Mental Health Awareness Month
May is Mental Health Awareness Month, an opportunity for the epilepsy community to raise awareness and challenge stigma about mental health concerns specific to people with epilepsy.
Epilepsy is not a mental health disorder. However, one-third of people with epilepsy have a psychiatric disorder as well. While some may experience few mental health issues, others experience debilitating anxiety, depression, or mood disorders. This is why it is important for the epilepsy community to continue to raise awareness about both epilepsy and mental health.
Register for Our Webinar: Mental Health and Childhood Epilepsy
Join us for our webinar on Thursday, May 18 at 1 pm CT that will explore the complexities of childhood epilepsy and mental health. Mental health and behavioral problems are just a few of the concerns that can affect children with epilepsy, and these can vary greatly from one child to the next. The speaker for this webinar is Dr. Clemente Vega, a board-certified clinical neuropsychologist and a certified subspecialist in pediatric neuropsychology. He is employed in the Epilepsy Center at Boston Children’s Hospital, with clinical and academic efforts that focus on pediatric epilepsy syndromes, neurosurgical outcomes, and cross-cultural application of neuropsychological assessment.
New Resource for the Community: Medication Access
The health insurance and prescription benefit ecosystem in the United States is incredibly complex. It can be difficult to understand and navigate how prescription drugs get from the manufacturer to the pharmacy and what determines whether or not your insurance will cover the cost. And yet, access to medications prescribed by your physician is important to both control seizures and ensure the best possible outcome for your health.
This is why CURE Epilepsy has created an online Medication Access resource. This resource will provide you with a high-level description of the prescription process so that you can better understand the various players and how to overcome obstacles to obtaining your medicine.
Join Team CURE Epilepsy for the Marine Corps Marathon (MCM)
Join us on October 29 in Washington DC for the 2023 Marine Corps Marathon (MCM). CURE Epilepsy is proud to be a new partner of this annual marathon. You can join fellow Team CURE Epilepsy runners in our nation’s capital as we raise critical funds and awareness in our efforts to find a cure for epilepsy, by promoting and funding patient-focused research.
Watch Our Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission
If you missed our latest Treatment Talk you can now access the recording. This Treatment Talk discusses focal epilepsy and the most recent treatments to help patients achieve medical remission. The talk features Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago, and Sarah Carlson, a patient of Dr. Smith’s who battled epilepsy and its corresponding stigma for many years before achieving seizure freedom. Viewers will learn about focal epilepsy, how a new medication called cenobamate can offer patients the hope of medical remission, and the benefits and risks identified in recent clinical trials of cenobamate.
CURE Epilepsy Discovery: CURE Epilepsy Funds Research to Investigate Mechanisms of Genetic Epilepsies
In this CURE Epilepsy Discovery, we highlight the efforts of our Epilepsy Genetics Initiative (EGI), which created a centralized database to store and analyze genetic signatures associated with epilepsy. We also summarize EGI’s impact on people living with genetic epilepsies and the epilepsy research community. We then feature three recent CURE Epilepsy grant awardees who have contributed to numerous aspects of genetic epilepsies ranging from the development and application of new technology to studying specific genes and their contributions to epilepsy, to exploring the epigenomic pattern associated with epilepsy.
What’s New from the Seizing Life® Podcast
Teen Tennis Player Remains on Court Despite Seizures and Stigma
Hear Reid’s story of a sudden onset of epilepsy that he experienced as a freshman in high school, his journey to controlling his tonic-clonic seizures, and how epilepsy and stigma have impacted his education and tennis career as one of the top young players in Oklahoma.
From LGS to Surgery to Just Being a Kid: A Mother Shares Her Son’s Epilepsy Journey
Mother and epilepsy advocate, Collen Jendreas, joins us to share her young son Owen’s epilepsy journey from initial onset to a diagnosis of Lennox-Gastaut syndrome (LGS), and discuss how two particular interventions have made a significant impact on Owen’s quality of life.
Watch these and all of our upcoming Seizing Life episodes here.
The CURE Epilepsy Store
Need apparel or accessories to spread epilepsy awareness and help support funding research to find a cure? Check out the CURE Epilepsy Store.
Please mark your calendar for the following key dates in the epilepsy community:
- January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
- October 18 – SUDEP Action Day
- October 31- November 1 – Epilepsy Awareness Day at Disneyland
- November – Epilepsy Awareness Month
- December 1-7 – Infantile Spasms Awareness Week
1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.