Greetings Epilepsy Community,
December is always an amazing time for the advocates, clinicians, researchers and other partners working within the epilepsy community. We gather during the first week of December to attend the Partners Against Mortality in Epilepsy (PAME) and American Epilepsy Society (AES) meetings. We meet, share information, exchange ideas, brainstorm, and dream about a world without seizures.
It is also a highlight for the CURE Epilepsy team because we host a reception where we have the privilege of announcing our newest grantees to the community. It is an honor to fund these amazing investigators as they push science forward to find a cure for epilepsy. Throughout the years, our grantees have made remarkable contributions to the search for a cure, and we know that these most recent recipients do the same.
One of our past grantees, Dr. John Swann at the Baylor College of Medicine, has recently published on his research identifying a promising new treatment for the severe form of epilepsy known as infantile spasms (IS). IS is a rare and catastrophic form of epilepsy with standard treatments only working in approximately 50% of patients. I mention Dr. Swann’s research as yesterday was the final day of Infantile Spasms Awareness Week, which also takes place annually during the first week of December. You can read more about Dr. Swann’s work here and you can learn more about IS here.
As we turn the corner on 2022, please know how very grateful I am for your enduring support this year, including your incredible generosity on Giving Tuesday. You helped us kick off the giving season with over $75,000 in gifts. Your donations, especially now, enable us to continue to fund groundbreaking research such as Dr. Swann’s and our latest grantees. As you make your charitable gifts this month, we hope you will include CURE Epilepsy so we can continue to work towards giving the epilepsy community the greatest gift of all, a world without epilepsy.
Wishing you and your families a joyous holiday season and best wishes for the New Year!
Through research there is hope.
In this CURE Epilepsy Update, please find information on:
- Give the Gift of Research this Season
- Free Webinar: Stem Cells & Epilepsy: A New Therapeutic Approach for Treating Drug-Resistant Epilepsy
- Congratulations to Our Newest CURE Epilepsy Grantees
- A Day in the Life – A Glimpse into the Day to Day of Living With a Medically Complex Child
- ReSearching to CURE Epilepsy Fall 2022 Edition
- What’s New from the Seizing Life® Podcast
- Other Podcasts Featuring CURE Epilepsy
- Black Friday Sale in the CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
Give the Gift of Research This Season
On Giving Tuesday, our community came together to raise over $75,000 for research. As the season of giving continues, we ask that you make a gift to help us fund the critically needed research that will help lead us to a cure. This research gives hope to the 65 million people worldwide impacted by epilepsy including Captain Jack Somers, a United States Marine Corps Veteran, who has had epilepsy since 2010 after a combat-related injury but didn’t receive an “epilepsy” diagnosis until earlier this year.
Free Webinar: Stem Cells & Epilepsy: A New Therapeutic Approach for Treating Drug-Resistant Epilepsy
Join us for this free webinar on Monday, December 19 from 2-3 pm CT. We will discuss a pioneering neural cell therapy approach that has the potential to lead to a novel treatment for drug-resistant focal epilepsy. Viewers will learn about the promising new data supporting this approach which will be presented by Dr. Robert Beach from the State University of New York (SUNY) Upstate Medical University, and they will hear more about the clinical trial and the immediate impact of this regenerative cell therapy from both the first patient enrolled in this clinical trial and a family member.
Congratulations to the Newest CURE Epilepsy Grantees
CURE Epilepsy is honored to present our latest grantees. Our research grants are awarded for cutting-edge, novel research projects that seek to accelerate treatments, improve outcomes, and get us to cures so that we can live in a world free of seizures.
A Day in the Life – A Glimpse into the Day to Day of Having a Medically Complex Child
Filmed in early 2019 when Adelaide was 3 years old, this short documentary, produced by CURE Epilepsy, shows a day in the life of one family living with epilepsy. Kelly and Miguel Cervantes’ daughter Adelaide was diagnosed at 7 months old with infantile spasms, a devastating and difficult-to-treat form of epilepsy.
ReSearching to CURE Epilepsy Fall 2022 Edition
Miss our latest edition of ReSearching to CURE Epilepsy? Check out our most recent report showcasing our recent research breakthroughs, community stories, and events that help raise the funds to support advancing research to find a cure. You can read about these stories and more here.
What’s New from the Seizing Life® Podcast
The Impact of Epilepsy and Seizures on Cognition and Memory
In this podcast, we speak with Dr. Alice Lam about the potential impacts of seizures on cognition and memory, both the short-term and the long-term effects. Dr. Lam also discusses how these impacts may differ amongst children, adults, and aging adults.
A Mother Shares her Daughter’s Journey from Infantile Spasms to Brain Surgery
Emma first displayed signs of infantile spasms at 4 months old. With the help of a home video and some “Mama Bear” research, Emma was quickly diagnosed and aggressive treatment with vigabatrin was started.
Watch these and all of our upcoming Seizing Life episodes here.
Other Podcasts Featuring CURE Epilepsy
Want to learn even more about epilepsy from the experts? CURE Epilepsy and some of our friends were recently highlighted on the following podcasts.
CURE Epilepsy CEO Beth Dean along with community advocate and mom Nora Hennessy spoke with Dr. Joseph Sirven about epilepsy and living with epilepsy on NPR’s “What’s Health Got to Do with It” in an episode released November 19 titled “Curing epilepsy; Mary Seacole, the little-known founder of modern nursing”.
Board Chair and Seizing Life host, Kelly Cervantes, talked about what it’s like to be a miraculous mama on the Miraculous Mamas podcast available here.
Black Friday Sale in the CURE Epilepsy Store
Our Black Friday comes to a close this Saturday, December 10! Get 20% off your entire purchase and guaranteed delivery before the holidays to help spread epilepsy awareness.
Please mark your calendar for the following key dates in the epilepsy community:
- January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
- February 13, 2023 – International Epilepsy Awareness Day
- March 26, 2023 – Purple Day
- October 18, 2023 – SUDEP Action Day
- November – Epilepsy Awareness Month
- December 1-7, 2023 – Infantile Spasms Awareness Week
1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.