Greetings CURE Epilepsy community,
Happy Holidays! As 2021 comes to a close, it affords us a chance to step back and reflect. One of the things that I am most proud of is that despite the challenges of the pandemic, CURE Epilepsy has maintained – and in fact increased – the number of research grants that we award. This year, we have awarded 9 grants so far, with a couple more slated to be funded later this month. We had the opportunity to recognize our newest grantees at the American Epilepsy Society meeting held over the weekend in Chicago. It was fantastic to meet in person and see all of our colleagues in the epilepsy community, engage in conversations about where research is going and what is needed, and view the progress that we have made in better understanding all of the epilepsies so that we can improve care until there is a cure.
We are able to fund these amazing scientists and their research because of your generosity and commitment to a cure. You helped us raise over $50,000 on #GivingTuesday. That’s incredible! One day of giving by our community will fund one-half of a Taking Flight research grant for a young investigator. And #GivingTuesday is just the beginning of the season of generosity. As you reflect on your year and think about your personal giving, please consider supporting our year-end campaign by making a gift today. Your investment will help us fund research so we can achieve our vision of a world without epilepsy.
On behalf of our researchers and the 65 million people worldwide living with epilepsy, thank you for your commitment to ending this devastating disease.
Through research there is hope.
Beth
In this CURE Epilepsy Update, please find information on:
- CURE Epilepsy Discovery
- AmazonSmile
- Former CURE Epilepsy Board Chair Gardiner Lapham Receives Prestigious AES Award
- Share Your Stories
- What’s New from the Seizing Life® podcast
Thank you for your enduring support of research toward a cure for epilepsy.
CURE Epilepsy Discovery: Targeting Infantile Spasms After Disease Onset
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In recognition of Infantile Spasms Awareness Week, which was held during the first week of December, CURE Epilepsy shared new research from Dr. Aristea Galanopoulou, a member of the CURE Epilepsy Infantile Spasms Initiative research team. Infantile spasms (IS) is a rare and severe epilepsy syndrome that typically begins within the first year of life. It’s characterized by subtle seizures that can lead to developmental delays as well as cognitive and physical deterioration, making the need to find a cure essential to help these infants critical.
Dr. Galanopoulou’s research sought a way to prevent the devastating consequences of IS by testing the effect of the drug compound rapamycin (also known as sirolimus) in a rodent model. Dr. Galanopoulou and her teams’ preclinical research discovered that rapamycin appears to be effective in treating IS and that using it early on during the peak of spasms can prevent damage normally caused by IS.
Read more about this extraordinary discovery and how it might help families treat infantile spasms in the future.
Support CURE Epilepsy by Shopping with AmazonSmile
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‘Tis the season for giving! Double down on your generosity by shopping for loved ones while also contributing to a great cause. You can help fund critically needed epilepsy research with a click of your mouse!
When you shop on Amazon with AmazonSmile, they’ll donate 0.5% of eligible purchases to your favorite charitable organization—no fees, no extra cost. As you begin to start your holiday shopping, please sign up on the AmazonSmile portal at smile.amazon.com and make CURE Epilepsy your charity of choice. Remember, you HAVE to make your purchases on Amazon Smile in order for the donation to be made!
Former CURE Epilepsy Board Chair Gardiner Lapham Receives Prestigious AES Award
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Gardiner Lapham, MPH, RN was awarded the 2021 Extraordinary Contributions to the Field of Epilepsy Award at the recent Annual Meeting of the American Epilepsy Society (AES) held in Chicago last weekend. Those who receive this award have made exceptional contributions to the epilepsy community across multiple areas, including science, education, leadership, and advocacy.
Gardiner has been a passionate epilepsy advocate since losing her 4-year old son Henry to sudden unexpected death in epilepsy (SUDEP). She is a former board chair of CURE Epilepsy, a co-founder of Partners Against Mortality in Epilepsy (PAME), and a trustee of the BAND Foundation. Her efforts also include advocating for narrowing the epilepsy treatment gap in low-income countries. You can listen to more about her efforts in Africa here.
And stay tuned . . . in early January, we will provide some highlights from the incredible learnings at the AES meeting.
Share Your Story, Share Your Truth
Share your story
Epilepsy is a complex condition which takes many forms. Not only does the diagnosis, cause, and treatment plan vary from person to person, but the impact epilepsy has on individuals, families, and communities is felt in a wide variety of ways.
Your lived experiences reinforce our commitment to fund research to find a cure. We’d be honored for you to share your story with us, as greater public knowledge and understanding about epilepsy will lead to more research dollars aimed at finding a cure.
What’s New from the Seizing Life® Podcast
Watch or Listen
Catch up on the latest episodes of our Seizing Life podcast, and listen in as we chat with:
- Dr. Renée Shellhaas, Pediatric Neurologist and Director of Research at CS Mott Children’s Hospital at the University of Michigan, Kari Rosbeck, President and CEO of the TSC Alliance and one of the founders of the Infantile Spasms Awareness Network (ISAN), and Beth Dean, CEO of CURE Epilepsy to discuss infantile spasms (IS), a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. Watch now
- Daniel Allbeck and his parents Paula and David Allbeck about their family’s journey with epilepsy. Listen as they share information about Daniel’s first seizure and subsequent diagnosis at the age of 22 through his decision to have epilepsy surgery, and how this has made a huge improvement in his life. Watch now
