CURE Update: September 2019

The CURE office is buzzing with excitement for all the upcoming events and educational opportunities on the horizon. It warms our hearts to see the epilepsy community coming together both on and offline to speak up in support of greater research funding and public education about epilepsy.

In this update, learn about our awareness-building Facebook Live Stream, a recent video we created focusing on how you can help change the conversation around epilepsy, what’s new from our Seizing Life podcast, details on the CURE 2019 Annual Chicago Benefit, and the exciting California events Day of Science: Epilepsy Conversations and Epilepsy Awareness Day at Disneyland.

Event and Facebook Live Stream – Real Talk: Speaking Up About Life with Epilepsy

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Rescue MedicationsWhile 3.4 million Americans are currently impacted by epilepsy, the everyday experience of living with this condition remains largely in the shadows. To shed light on this “invisible” condition, a panel of individuals with epilepsy will speak to building careers, relationships, and more. Moderated by CURE Board Member and activist Kelly Cervantes, this discussion promises to be a unique, stigma-busting event!

If you’re in Chicago, please join us for the live filming and post-panel reception. Otherwise, catch the action on our Facebook page.

Video: Change the Conversation Around Epilepsy

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CURE Epilepsy Research AppThe stigma associated with epilepsy can lead those affected to face challenges with employment, education, and even medical care.

Watch and share this important information to help change the conversation around epilepsy, educate the general public, and break down the stigma.

New from Seizing Life, a CURE Podcast

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Seizing LifeDive into the latest episodes of Seizing Life, where we explore:

Save the Date for the CURE 2019 Annual Chicago Benefit!

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Seizing LifeMark your calendars: this year’s spectacular CURE 2019 Annual Chicago Benefit is on Monday, November 18!

We’re celebrating the innovative epilepsy researchers whose careers CURE has helped launch for over 20 years. These are the groundbreaking scientists who are helping break open new avenues of investigation in the field of epilepsy research, giving hope to those impacted by the condition, and pushing us closer to a cure.

Our amazing performers for this year’s benefit are Rock and Roll Hall of Famer Nils Lofgren, star of Chicago’s Hamilton Miguel Cervantes, and renowned Chicago-based vocal group Musicality.

California Events: CURE’s Day of Science: Epilepsy Conversations and Epilepsy Awareness Day at Disneyland

Attend Day of Science: Epilepsy Conversations

Broadway Sings for CUREOn Saturday, September 21, people with epilepsy and their caregivers have the opportunity to ask a panel of doctors and researchers their questions during Day of Science: Epilepsy Conversations at the Children’s Hospital of Orange County. At this free event, leading experts will address attendees’ questions on the latest research as it relates to new epilepsy treatment options, surgery, genetics, and more. Also, enjoy small-group discussions with the panelists over lunch.

Day of Science: Epilepsy Conversations is made possible thanks to the generous support of the BAND Foundation, Eisai, and Greenwich Biosciences. This event is also hosted in partnership with the Epilepsy Support Network of Orange County.

Attend Epilepsy Awareness Day at Disneyland

Broadway Sings for CUREPaint the park purple at Epilepsy Awareness Day at Disneyland! On November 4 and 5, join us at the expo to access epilepsy resources while learning about new treatment options and devices. Then head to Disneyland Park on November 6 to enjoy the rides, build lasting friendships, and spread epilepsy awareness.

We’ll announce our fun booth activities soon, so stay tuned!

Upcoming CURE Events

September 21: Day of Science: Epilepsy Conversations – Orange, CA
September 29: Chicago Half Marathon/5K – Chicago, IL
October 7: Real Talk: Speaking Up About Life with Epilepsy – Chicago, IL and Online
November 3: The 2019 TCS New York City Marathon – New York, NY
November 4-6: Epilepsy Awareness Day at Disneyland – Anaheim, CA
November 9: Dressage for a Cause – Batavia, OH
November 18: CURE 2019 Annual Chicago Benefit – Chicago, IL
December 3: #GivingTuesday – Online

View All Upcoming Events

Webinars: Two-Part Series on Rescue Medications

Seizures can be both unpredictable and unrelenting. When a seizure becomes an emergency, rescue medications provide immediate relief and help prevent the need for emergency care. While existing therapies do stop these epilepsy emergencies in many patients, some are still searching for an option that works for them.

In this two-part webinar series, you will gain insight on the different epilepsy emergencies, existing rescue medications,  promising research in this space, and what rescue therapies are currently in the pipeline. These webinars will feature leading experts in the field who have recently participated in rescue medication research trials.

In our first webinar on August 13, Dr. Kamil Detyniecki of the University of Miami will provide an overview of the different types of seizure emergencies, while also discussing the currently available rescue medications.

Our second webinar on September 10 features Dr. Nathan Fountain of the University of Virginia, who will explore the latest research on rescue medications. His presentation will include a look at the rescue medication pipeline and the new delivery methods which may become available to patients.

During a live Q&A at the end of each webinar, these leading experts will answer your questions such as:

  • What makes different delivery methods more or less effective for some patients?
  • Are rescue medications only for individuals who experience seizure clusters?
  • What are the potential risks associated with using rescue medications?

The first webinar will feature Dr. Kamil Detyniecki, Assistant Professor of the Clinical Neurology Epilepsy Division, at the University of Miami.  The second webinar will be presented by Dr. Nathan Fountain, Professor of Neurology and the Director of the Comprehensive Epilepsy Program at the University of Virginia.

CURE Update: Get Involved! Join Our Next Webinar and Host an Event This Summer

Greetings! It’s been an inspirational month here at CURE between our Broadway Sings for CURE benefit in New York and awarding our Educational Enrichment Fund scholarships to 10 amazing students.

In this update, we hope to inspire you to continue your involvement with the CURE community throughout the summer. Click on the links below to learn more about CURE happenings!

Epilepsy SurgeryWebinar and Live Q&A on Epilepsy Surgery: Advancements, Options, & Considerations

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Discover when to consider epilepsy surgery and what recent advances have been made in this field in our upcoming free webinar, Wednesday, July 10. Dr. Kate Davis from the University of Pennsylvania will address these topics and share how to approach your doctor about surgery.

This webinar is supported by the generosity of the BAND Foundation.

CURE ChampionBecome a CURE Champion This Summer

Start Your Summer Fundraiser

Have fun in the sun while raising vital funding for epilepsy research by hosting a CURE Champion event! From lemonade stands to block parties, you can use your creativity and skills to spread awareness about the desperate need for a cure for epilepsy.

Not sure where to start? Our Outreach Team is here to help! Send them an email at events@cureepilepsy.org to kick off your summer fundraising event.

The CURE Champions program is supported in part by Greenwich Biosciences.

Broadway Sings for CUREBecome a Monthly Donor to Impact Epilepsy Research All Year!

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Support groundbreaking epilepsy research throughout the year by becoming a monthly donor! Your donations build-up over time, which means any recurring donation can make a big impact, helping to transform lives.

Set up your monthly donation through our website by checking the “Recurring Gift” box when you donate.

Seizing LifeNew from Seizing Life, a CURE Podcast

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Dive into the latest episodes of Seizing Life, where we explore:

Webinar: Epilepsy Surgery: Advancements, Options, & Considerations

For some people with uncontrolled epilepsy, surgery is an effective and important option to consider. This webinar will help patients and caregivers approach this difficult and sometimes confusing conversation with their doctors.

Dr. Kate Davis will explore recent advances in epilepsy surgery which have increased not only the types of surgeries available to patients but expanded who is an appropriate candidate for surgery. Dr. Davis will also discuss the different tests performed as part of an epilepsy surgical evaluation and review current surgical options including resective surgery, laser ablation, and implantable devices.

During a live Q&A at the end of this webinar, you may ask Dr. Davis questions such as:

  • What are the potential risks to consider when contemplating brain surgery?
  • What resources are available for patients and their family members who might be considering surgery?
  • What role does an assessment of your cognition and behavior (language skills, memory, problem solving, etc.) play in determining the potential benefit and risks of surgery?

This webinar will be presented by Dr. Kate Davis, Medical Director of the Epilepsy Surgical Program and Epilepsy Monitoring Unit at the University of Pennsylvania.

Webinar on Epilepsy and Dietary Therapies: How What You Eat May Control Seizures

For individuals with epilepsy – particularly if their seizures are not controlled by available medications alone – dietary therapies have the potential to help. Join us for a free webinar on these therapies Thursday, June 14 at 1:00PM CT.

The presenters Dr. Jong Rho from the University of Calgary and Dr. Eric Kosoff of Johns Hopkins will discuss the ketogenic diet and other evidence-based dietary options. These neurologists will examine the research supporting dietary epilepsy therapies as well as how patients and caregivers can work with their doctors to determine if these therapies are right for them.

Register to attend.

This webinar is supported by the generosity of the BAND Foundation.

Webinar: Transitioning from Pediatric to Adult Epilepsy Care

Transitioning from pediatric to adult care is a major milestone for individuals with epilepsy and their families. Unfortunately, this process can be delayed due to the multitude of health and comorbid conditions which can accompany epilepsy, as well as the personal bond between the family and their pediatric care team.

This webinar discusses how epilepsy patients, their families, and pediatric neurologists can develop a plan to prepare for the transition of care. The presenter, Dr. Joseph Sirven, explores what factors to consider when transitioning care, established research guidelines for transitioning care, and the resources available to assist everyone involved.

During the webinar, you may ask your questions such as:

  • Is the transition of care plan dependent upon a patient’s epilepsy type?
  • Do treatment options change when a patient begins seeing an adult neurologist?
  • What research has been done into the effects of transition care on a patient’s lifestyle?

This webinar is conducted by Dr. Joseph Sirven, Professor of Neurology and Chair Emeritus in the Department of Neurology and Director of the Epilepsy Program at the Mayo Clinic’s Arizona Campus. Dr. Sirven serves as editor-in-chief at www.epilepsy.com.

NeurologyLive™ Launches “Epilepsy: Current Trends and Treatments for Focal Seizures”

A digital and print multimedia platform dedicated to providing health care professionals treating neurological diseases direct access to expert, practice-changing news and insights in neurology, presents its most recent “Peer Exchange” panel discussion, “Epilepsy: Current Trends and Treatments for Focal Seizures.” The video series welcomes several experts in the treatment and management of epilepsy who provide peer-to-peer dialogue, authoritative insights, opinions and perspectives on current trends and available treatments for focal seizures.

This NeurologyLive™ “Peer Exchange” panel features four distinguished experts: Michael R. Sperling, M.D., Baldwin Keyes professor of neurology, director of the Jefferson Comprehensive Epilepsy Center and Clinical Neurophysiology Laboratory at Thomas Jefferson University, as the moderator; Kathryn A. Davis, M.D., M.S, FAES, assistant professor of neurology at the Hospital of the University of Pennsylvania and medical director of the Epilepsy Monitoring Unit and Epilepsy Surgical Program at the University of Pennsylvania; Trevor J. Resnick, M.D., pediatric neurologist in the department of neurology at Nicklaus Children’s Hospital-Brain Institute of the Miami Children’s Health System and a clinical professor in the department of neurology at Herbert Wertheim College of Medicine; and Jesus E. Pina-Garza, M.D., director of pediatric epilepsy at TriStar Medical Group Children’s Specialists.

Union Students Host CURE Fundraiser

Proceeds from this event will be donated to Citizens United for Research in Epilepsy

Union College students are hosting the second annual Skate For Alex fundraiser at Frank Messa Rink in Schenectady, NY on Sunday from 2 to 4 p.m.

The fundraiser is held in remembrance of Alex Askenazy, a Union student who died at the school in October 2017 of sudden unexplained death in epilepsy. Friends of Askenazy and the Eta Gamma chapter of Alpha Phi Omega are hosting the fundraiser.

The group, which started the annual fundraiser last year, plans to donate the proceeds to Citizens United for Research in Epilepsy, which funds research into epilepsy and the rare occurrence of sudden unexplained death in epilepsy.

Webinar: Epilepsy, Pregnancy, and Contraception

Pregnancy and contraception can be a difficult subject for women with epilepsy to discuss with their doctors, however it is critical for reproductive health. Estimates suggest there are more than 1.1 million women in the US with epilepsy of childbearing age.

Women with epilepsy must face certain considerations when starting a family. This webinar will focus on the research surrounding epilepsy and pregnancy, as well as provide strategies to help minimize risks for both mother and baby.

This webinar will address questions, such as:

  • What does research show about the safety of certain anti-seizure drugs in pregnancy?
  • What resources are available to women with epilepsy who are planning a family?
  • Which forms of contraception interact with anti-seizure medications?

This webinar will be conducted by Dr. Elizabeth Gerard, Associate Professor of Neurology with a specialty in epilepsy at Northwestern University. Her clinical focus is contraceptive and pre-conception counseling as well as the management of epilepsy during pregnancy.

Webinar: Separating Stigma from Truth – Epilepsy Research and Resources

Have you ever been afraid to talk about your epilepsy to friends and coworkers for fear of repercussions? Epilepsy stigma is prolific and can affect all aspects of a person’s life. Approximately 50% of people in the US and Europe report feeling stigmatized because of their epilepsy diagnosis, according to recent studies.

Discover research findings about the public attitudes and beliefs about epilepsy, as well as how likely people with epilepsy are to encounter stigma due to negative public attitudes. We review how these harmful stereotypes affect quality of life, and explore what recent evidence suggests communities can do to improve public attitudes and reduce epilepsy stigma.

Let’s end these epilepsy stereotypes and shine a light on the truth.

Featured Presenter: Ann Jacoby, PhD, is Professor Emerita in the Department of Public Health and Policy at the University of Liverpool, UK. She is a social scientist whose research career has focused on the lived experiences of individuals with ill health, in relation to its daily life impacts and healthcare outcomes.  She has had a particular interest in chronic neurological illness, with a major focus on epilepsy.