SUDEP Action Day, Free Webinars, New Seizing Life, and more.
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Greetings CURE Epilepsy community,
On Friday, September 17th, the epilepsy community came together for our second annual Unite to CURE Epilepsy ([link removed]) community virtual fundraiser. Your participation in this event has been amazing. I would like to sincerely thank everyone who donated, took part in, and tuned in to our event. You’ve helped us raise $1.77M, and you can still donate ([link removed]) to help us reach $1.8M. Your commitment to CURE Epilepsy will support innovative and groundbreaking research to help us find a cure to achieve our vision: a world without epilepsy.
As we move into October, we turn our attention to [link removed] Action Day on October 20th. Don’t miss all the information and content that CURE Epilepsy will have during the entire week of October 18th. We will feature free webinars on SUDEP, information on promising research advancements that were funded by CURE Epilepsy, and much more to help inform and educate our community.
In this CURE Epilepsy Update, please find information on:
* SUDEP Action Day – October 20, 2021 ([link removed])
* Free Webinar | SUDEP & The Heart – October 21, 2021 ([link removed])
* CURE Epilepsy CARES ([link removed]) | NYC ([link removed]) and Virtual ([link removed])
* CURE Epilepsy Board Updates ([link removed])
* PAME Facebook Live | New Advances in Stopping SUDEP – October 14, 2021 ([link removed])
* Register for the 2021 PAME Meeting taking place on December 2nd, 2021 ([link removed])
* What’s New from the Seizing Life® Podcast ([link removed])
Thank you for your enduring support of research toward a cure for epilepsy.
Beth Lewin Dean, CEO
** SUDEP Action Day #Time2Change
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Wednesday October 20th is SUDEP Action Day, a global event that aims
to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and the associated risks
SUDEP has on those living with epilepsy.
Join CURE Epilepsy throughout the week ([link removed]) beginning October 18th for important information about SUDEP from researchers, community members, and more. Please encourage your friends and families to share this information. It’s #Time2Change what people know about SUDEP, so they can reduce the risk for their loved one living with epilepsy.
** Free Webinar: SUDEP & The Heart
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Register Now ([link removed])
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This informative webinar will help viewers learn how inherited neuronal or cardiac diseases may lead to electrical disturbances in both the brain and heart, how altered cardiac function may lead to SUDEP, and why it is critical for the epilepsy community to take a holistic approach to fully understand biological changes that ultimately
cause SUDEP.
The webinar is free to attend and is intended for everyone, including people with epilepsy, their friends, family, and caregivers.
Thursday, October 21st | 1:00pm CT ([link removed])
** CURE Epilepsy CARES Events | NYC and Virtual
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CURE Epilepsy CARES (Conversations About Research in Epilepsy & Seizures) is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy and epilepsy research. Join us as neurologists, epilepsy specialists, and other healthcare professionals answer your questions about cutting-edge research and epilepsy treatments.
Register now ([link removed]) for our in-person CARES New York City event or for our virtual CARES event featuring experts from the San Francisco area
CURE Epilepsy CARES NYC | Weill Cornell Medicine campus ([link removed])
Saturday, November 6, 2021 - 10:00am CT
CURE Epilepsy CARES Virtual Event | Zoom Teleconference ([link removed])
Friday, November 19, 2021 - 12:30pm CT
** CURE Epilepsy Board Updates
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Please welcome Shalee Cunneen ([link removed]) , MBA, to the CURE Epilepsy Board of Directors! With her daughter Ella as inspiration, Shalee first became a member of CURE Epilepsy’s Lay Review Council (LRC) participating in the review of CURE Epilepsy’s
scientific grant proposals by contributing a lay perspective and helping to ensure the patient point of view is represented at all stages of the review process. She looks forward to serving on the CURE Epilepsy board and continuing the support of our mission to funding research for a cure for epilepsy.
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We would also like to congratulate Kelly Cervantes ([link removed]) on becoming our new board chair! Kelly has been on the CURE Epilepsy board for four years and hosts our Seizing Life podcast. At seven months old, her daughter Adelaide was diagnosed with infantile spasms, a devastating and difficult-to-treat form of epilepsy. For three years she
fought for answers and better treatments in hope that something would help her, but sadly the seizures could not be controlled, and Adelaide passed away. It is for this reason that Kelly will never stop advocating and fighting for a cure.
A special thank you from all at CURE Epilepsy to Stacey Pigott ([link removed]) , our outgoing board chair.
** PAME Facebook Live | New Advances in Stopping SUDEP
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Learn More ([link removed])
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Epilepsy affects every individual and their family differently; however, all seek to understand the diagnosis, treatment, and risks associated with their epilepsy. One incredibly important risk to be aware of is SUDEP.
Learn more ([link removed]) about ongoing research that is advancing the understanding of SUDEP and new technologies, such as seizure detection and seizure prediction devices, designed to reduce the risk of SUDEP.
Thurs, October 14th, 2021 | 3pm CT
Where: Facebook Live ([link removed])
** Registration for the 2021 PAME Meeting now open
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Learn More ([link removed])
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Partners Against Mortality in Epilepsy (PAME) is a powerful, growing collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy. The first PAME conference was convened in 2012 with the goal of creating a multi-stakeholder collaboration to increase understanding of epilepsy-related mortality, and to champion its prevention.
Registration is now open ([link removed]) for the December 2, 2021 PAME Conference and American Epilepsy Society (AES) Annual Meeting in Chicago. They are also offering a free live stream for those not able to travel to Chicago.
** New from Seizing Life®, a CURE Epilepsy Podcast
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Watch or Listen ([link removed])
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Catch up on the latest episodes of our Seizing Life podcast, and listen in as we chat with:
* Mary and Tom Nugent, the parents of 2 sons that have grown up with epilepsy. With one son severely impacted from infancy and another diagnosed at the age of 9, the Nugents have experienced the vastly different impacts of epilepsy in the microcosm of their own household. Watch or Listen. ([link removed])
* Cindy and Elvin Angulo whose 3-year old daughter Vera was born with Sturge-Weber syndrome, resulting in several different seizure types during her life. Hear about their journey with Vera and the connection between epilepsy and Sturge-Weber syndrome. Watch or Listen. ([link removed])
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. ([link removed])
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Our mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy is a non-profit 501(c)(3) tax-exempt organization. Our tax identification number is 36-4253176.
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