Greetings CURE Epilepsy community,
I hope that everyone is enjoying summer and the relaxing of the COVID-19 restrictions that the vaccines have brought us. Unfortunately, as I write this, our country is facing a resurgence of COVID-19 that rivals what we faced last winter. It reminds me how grateful I am for science, research, and discovery.
CURE Epilepsy is an organization rooted in science. It is in our DNA, figuratively of course. We exist to fund and drive scientific research so that we better understand the causes of seizures and epilepsy in pursuit of a cure. Through our research and the research of others, the epilepsy community has increased our understanding of the causes of epilepsy, identified genes associated with epilepsy, developed drugs to manage seizures, and identified risk factors for SUDEP. Through our research and the research of others, we will ultimately find cures so that we can live in a world without epilepsy.
One of the great learnings from this pandemic is that we can accelerate discovery by collaborating and focusing our resources. Our epilepsy community and other disease communities will be evaluating how we can leverage the COVID-19 vaccine experience to drive faster therapies and cures. Because the platform for mRNA vaccines existed and we had existing data on the structure, genome, and lifecycle of the coronavirus family, the scientific community was able to develop multiple vaccines for COVID-19 with amazing speed.
These vaccines underwent the same FDA-required development protocols (randomized, placebo-controlled clinical trials) as our antiepileptic drugs do. CURE Epilepsy encourages anyone who is eligible and has not yet been vaccinated to consult with their physician and discuss any concerns that you may have. We also have information on our website about the vaccine, including a video discussion with Dr. Elizabeth Thiele, Director of the Pediatric Epilepsy Program at Massachusetts General Hospital. Please be safe, get vaccinated, and protect one another!
In this CURE Epilepsy update, please also find information on:
- Unite to CURE Epilepsy, our Virtual Community Event – September 17
- My Shot at Epilepsy Raffle – Ends August 11
- CURE Epilepsy Champions Summit – August 27
- Runs for a Purpose — August 18-29
- Team CURE Epilepsy Marathons in New York and Los Angeles
- What’s New from the Seizing Life® Podcast
Unite to CURE Epilepsy – Virtual Community Event – Friday, September 17th at 7pm CT
Register
On Friday, September 17th at 7pm CT join live host Mike Barnicle, award-winning journalist, contributor to MSNBC’s Morning Joe, and guests Nils Lofgren, Miguel Cervantes, Chef Rick Bayless, and others, for an evening filled with engaging entertainment, moving stories from the epilepsy community, and promising updates from leading researchers.
Be part of the fun! Host a Watch Party and connect with the broader CURE Epilepsy family.
My Shot at Epilepsy Raffle – Ends August 11 at 11:59pm CT
Buy raffle tickets
There’s just one day left to enter and win a once-in-a-lifetime experience to see the “friends and family” dress rehearsal of Hamilton before it returns to Broadway. Raffle tickets are $25 and up, and all funds raised will go to support funding critically needed research to find a cure for epilepsy. Don’t throw away your shot…Enter today and be in the room where it happens!
CURE Epilepsy Champion Summit – August 27
Register
Looking to create your first CURE Epilepsy Champion event? Or, are you are a current Champion looking to grow or refine your existing event? If either of these describes you, join us on Friday, August 27th at 12pm CT for our CURE Epilepsy Champion Summit. At this virtual summit, you will learn strategies from some of our most successful CURE Epilepsy Champions and discuss other ways to be involved.
Runs for a Purpose — August 15-29
Sign up
Run or walk anywhere you want and help raise money to fund research for a cure for epilepsy. On August 15-29 with the @RunsForAPurpose virtual race program, you select the distance of your choice (5K, 10K, or Half-Marathon), you receive the race package with t-shirt, medal, and finisher’s certificate, and all money your raise or donate benefits CURE Epilepsy. #DoGoodFeelGood
Team CURE Epilepsy Marathons in New York and Los Angeles
Sign up
We still have entries available in the Los Angeles and New York marathons! Contact us to learn more about how you can join Team CURE Epilepsy and run to support the 1 in 26 impacted by epilepsy.
Not quite ready for a full marathon? You can run a half-marathon with Team CURE Epilepsy in Los Angeles, too! Any questions? Email Brandon Laughlin
What’s New from the Seizing Life® Podcast
Watch or Listen
Catch up on the latest episodes of the Seizing Life podcast and learn about:
- Lissy’s journey to receiving and addressing her daughter’s infantile spasms diagnosis, including why early detection and treatment are so important, where to find infantile spasms supports groups, and how awareness and education among parents, caregivers, and doctors can result in more positive outcomes for babies with infantile spasms. Listen or Watch
- Dr. Steve White’s perspective on epilepsy, the state of epilepsy research, and the prospects for new discoveries and treatments given his role as epilepsy researcher, educator, and someone living with epilepsy. Listen or Watch
- hree college students who share their perspectives on how to approach the transition to college if you live with epilepsy, including how to approach professors for accommodations, how to assert your independence, and how to take responsibility as a young adult living away from a parent for the first time. Listen or Watch
Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.