Greetings Epilepsy Community,
As CURE Epilepsy continues to celebrate our 25th anniversary, I’m reminded again of how far we have come as a community, how we have advanced our understanding of the brain, and how much closer we are to cures. This anniversary has given us a wonderful opportunity to look back on our accomplishments over the years and share with you the impact that your support and donations have made. We will continue to share stories of impact with you in our monthly Discovery emails, in our webinars, and on social media.
If you will indulge me for a moment, I would like to call out the amazing team at CURE Epilepsy that drives this impact on behalf of our community to get us to a world without seizures. By the time you read this, Employee Appreciation Day on March 3rd will have passed, but I have the privilege of working with the most amazing, dedicated team of scientists, fundraisers, communications professionals, and support staff that any leader could ask for. The CURE Epilepsy staff is deeply committed to driving our mission, ensuring that we steward every dollar donated by the community. For those of you who have had the opportunity to interact with these wonderful people, I hope that you share my sentiment.
And if you haven’t had a chance to meet the team, we hope to see you at CURE Epilepsy or community events throughout the year, whether that be at our 25th Anniversary Gala in Chicago this May, at the Purple Day® Expo in Florida later this month, or at one of the many CURE Epilepsy champion events held in your communities
In this CURE Epilepsy Update, please find information on:
- Tickets Now Available for our 25th Anniversary Gala in Chicago
- Take Our Important Community Survey Before it Closes
- CURE Epilepsy Discovery: Implantable Devices Represent a Novel Way to Detect and Treat Epilepsy
- Paws for a Cause Awareness Event
- Watch Our Webinar: Cutting-Edge Technologies for Treating Nano-Rare Epilepsies
- Register for Our Upcoming Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy
- Fox 11 Los Angeles Speaks with CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers
- Visit CURE Epilepsy at the 4th Annual Purple Day® for Epilepsy Awareness Around the World Expo
- Mind Your Brain Conference at Penn Medicine
- What’s New from the Seizing Life® Podcast
- The CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
Tickets Now Available for our 25th Anniversary Gala in Chicago
Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.
Take Our Important Community Survey Before it Closes
As we celebrate our 25th anniversary this year, we are looking ahead to continued progress in finding cures for epilepsy. To make sure we are meeting your needs at this organizational milestone, we are conducting a community survey to inform our 5-year strategic planning process. We want to better understand your interests and needs, our organizational strengths and weaknesses, and how we can better serve and communicate with the broader epilepsy community.
The deadline to submit your feedback is today at 11:59pm CST. We appreciate you sharing your thoughts and helping ensure that CURE Epilepsy incorporates feedback from individuals living with epilepsy, their loved ones, caregivers, epilepsy researchers, and clinicians in the community. If you have any difficulties accessing or completing the survey, please email dana.vielmetti@cureepilepsy.org.
CURE Epilepsy Discovery: Implantable Devices Represent a Novel Way to Detect and Treat Epilepsy
Implantable epilepsy devices offer novel avenues to detect and treat seizures by recording seizure activity from neurons (brain cells) in high resolution and stimulating these neurons in a way that halts seizures. In this latest CURE Epilepsy Discovery, we highlight Brian Litt at the University of Pennsylvania who was funded by CURE Epilepsy in 2011, and whose work has led to the development of electrodes and technology that offer incredible precision in recording from and stimulating neurons.
Paws for a Cause Awareness Event
Join Miami University’s PAWS for a Cause student organization for a hybrid (live + virtual), educational event featuring people living with epilepsy and family members sharing their experiences with service dogs. CURE Epilepsy’s CEO, Beth Lewin Dean, will also speak briefly about epilepsy and our organization.
Watch Our Webinar: Cutting-Edge Technologies for Treating Nano-Rare Epilepsies
Did you miss our January webinar? Don’t worry, you can now watch the recording or read the transcript on our website! This webinar discusses the use of individualized antisense oligonucleotide (ASO) treatments for patients with nano-rare epilepsies. ASOs are short strands of modified deoxyribonucleic acids (DNA) that can be developed rapidly and inexpensively and can specifically target and potentially halt the development of disease-causing proteins, thus attempting to change the course of the disease.
Register for Our Upcoming Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy
Our next webinar will take place on Wednesday, March 29 at 2 pm ET and will review the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar. Stay tuned for more information.
Fox 11 Los Angeles Speaks with CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers
CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers, spoke with Fox 11 Los Angeles last week on their segment aimed at raising awareness of epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP), and infantile spasms. Additional guests on the segment include CURE Epilepsy community member Francesca Calloway, mother of a child with epilepsy, and an Associate Clinical Professor of Pediatrics at UCLA, Dr. Shaun Hussain.
Visit CURE Epilepsy at the 4th Annual Purple Day® for Epilepsy Awareness Around the World Expo
The Purple Day® for Epilepsy Awareness Around the World Expo is taking place Saturday, March 25, 2023, from 8:15 am-5 pm ET at Disney’s Contemporary Resort in Florida. Programming is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to increase epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about the services and support available to them. CURE Epilepsy will present the Purple Day® Talk session “CURE Epilepsy’s Research & Response to the Rare Epilepsy Community” during the expo. Be sure to stop by our booth and say hi!
Mind Your Brain Conference at Penn Medicine
Register today for The Mind Your Brain conference (which can be attended in person or virtually). This conference is focused on Traumatic Brain Injury (TBI) survivors, families and friends and is designed to share research, insights, therapies and other useful information with attendees, and also provide a forum for attendees to interact and connect with others affected by a brain injury.
What’s New from the Seizing Life® Podcast
After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers
Carmen Zannier shares her 35-year epilepsy journey, discusses her recent decision to go public with her diagnosis, and explains how her passion for mountain climbing has led her to raising funds for epilepsy research.
Epilepsy Can’t Stop Young Girl’s Competitive Spirit
When it became clear that Christiane needed special attention and considerations in her training program, her father decided to become her coach. Despite experiencing seizures before races, Christiane has continued to compete at the highest level, making it to the final round of the 2021 Junior Olympics in the 100-meter dash. Even as they struggle to control Christiane’s seizures, her parents continue to support and encourage Christiane’s passion for running, and Christiane’s competitive spirit remains intact as she looks forward to the next Junior Olympic trials.
Watch these and all of our upcoming Seizing Life episodes here.
The CURE Epilepsy Store
Need apparel or accessories to raise epilepsy awareness? 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
- March 25 – Purple Day® Expo at Disney World
- March 26 – Purple Day®
- 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.
