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. Join us as clinicians answer your questions about cutting-edge research and epilepsy treatments.

This Q&A event will be moderated by Carl E. Stafstrom, M.D., Ph.D. Dr. Stafstrom is the Lederer Endowed Chair of Pediatric Epilepsy, and serves as the Director of Pediatric Neurology and Director of the John M. Freeman Pediatric Epilepsy Center. The panel will consist of medical professionals from around the Baltimore region.

CURE Epilepsy CARES includes:

• A panel discussion with Q&A, featuring epilepsy experts, with topics and questions determined by the attendees. The panel will discuss the latest in epilepsy research and what it means for patients and families.
• Lunch and Learn featuring intimate, roundtable discussions with epilepsy experts. A free boxed lunch will be provided.
• An Epilepsy Resource Center including information about community resources for epilepsy, available treatment options, and clinical trial opportunities.
• The opportunity to network and engage with other families and advocacy groups in the epilepsy community.

Topics of Conversation May Include:

• New Epilepsy Treatment Options
• Genetics and Precision Medicine
• Drug-Resistant Epilepsy and Surgery
• Anxiety and Depression in Epilepsy
• Adult-onset Epilepsy and Women’s Health
• ….and other topics related to advancements and research in epilepsy

Speakers:

• Carl E. Stafstrom, M.D., PhD (John Hopkins)
• Perry J. Foreman, MD, PHD (LifeBridge Health Brain & Spine
  Institute)
• Camilo Gutierrez, MD (University of Maryland School of
  Medicine)
• Christa Habela, MD, PHD (Johns Hopkins University)
• Emily Johnson, MD, PHD (Johns Hopkins University)
• Ahmad Marashly, MD (Johns Hopkins University)

Location: Johns Hopkins Hospital, Bloomberg Children’s Center, 1800 Orleans Street Baltimore, MD 21287

Register

FAQs

Will meals be provided? 
YES! CURE will provide morning refreshments and lunch.

Can my guests register onsite?
YES! Staff will be available to register anyone onsite.

How can I contact the organizer with any questions?
Please contact us at events@CUREepilepsy.org or 312-255-1801. If you need to contact the organizer on the day of the event, you must email events@CUREepilepsy.org.

Let’s paint Disneyland purple at the annual Epilepsy Awareness Day at Disneyland! This family-friendly event takes places October 31-November 1 and unites epilepsy patients, families, doctors, researchers, and organizations. This event includes a free 2-day expo that allows attendees to learn from some of the leading epilepsy professionals from around the US, as well as learn about the latest research, technological advancements, and epilepsy services available to those living with epilepsy and their loved ones.

Join CURE Epilepsy live for the following:

Monday, October 31 from 4 pm – 5 pm – Kelly Cervantes and Kate Neale-Cooper discuss “Advocating For Your Child, Unleashing Your Inner Mamma Bear”

Tuesday, November 1 from 1:45 pm – 3 pm – Kelly Cervantes hosts a new Seizing Life(r) episode “Kids Ask Docs The Darndest Things”

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. Join us as clinicians answer your questions about cutting-edge research and epilepsy treatments.

This CARES event featured medical professionals from around the Cincinnati area.

CURE Epilepsy CARES includes:

• A panel discussion with Q&A, featuring epilepsy experts, with topics and questions determined by the attendees. The panel will discuss the latest in epilepsy research and what it means for patients and families.
• Lunch and Learn featuring intimate, roundtable discussions with epilepsy experts. A free boxed lunch will be provided.
• An Epilepsy Resource Center including information about community resources for epilepsy, available treatment options, and clinical trial opportunities.
• The opportunity to network and engage with other families and advocacy groups in the epilepsy community.

Topics of Conversation May Include:

• New Epilepsy Treatment Options
• Genetics and Precision Medicine
• Drug-Resistant Epilepsy and Surgery
• Anxiety and Depression in Epilepsy
• Adult-onset Epilepsy and Women’s Health
• ….and other topics related to advancements and research in epilepsy

Speakers: Medical professionals from around the Cincinnati area.

Location: University of Cincinnati Gardner Neuroscience Institute, 3113 Bellevue Ave, Cincinnati, OH 45219

Register

FAQs

Will meals be provided? 
YES! CURE will provide morning refreshments and lunch.

Can my guests register onsite?
YES! Staff will be available to register anyone onsite.

How can I contact the organizer with any questions?
Please contact us at events@CUREepilepsy.org or 312-255-1801. If you need to contact the organizer on the day of the event, you must email events@CUREepilepsy.org.

Ella’s Race 2022–Sunday, August 21st
to benefit CURE Epilepsy

Please walk or run with us!

Run/Walk registration: A donation of $25 per runner/walker is suggested, and that includes your walk T-shirt to wear that day!

Donate: Can’t attend but still want to help us cure epilepsy? Make a tax-deductible donation!

Event Details: On Sunday, August 21st, we will have a 2.6 Mile Fun Run AND a one-mile walk through La Grange Park to raise awareness and funds for epilepsy research! 1 in 26 people will develop epilepsy in their lifetime, and our 2.6-mile fun run route brings awareness to this fact. This is a family-friendly event, with music, snacks, and lots of smiles!

The event will begin at 10 am at the 500 N. Catherine block in La Grange Park. The race route will be closed for the event, so we encourage parking on Kensington or Ashland. Additional details for the event will be emailed to participants prior to race day!

Exciting News!

Epilepsy is frustrating and difficult to treat for many reasons, not the least of which is all the different ways it can manifest. Ella’s primary form of epilepsy, epileptic spasms, is particularly difficult because it is rare and there is very little research on it. In all the second (3^rd/4^th/5^th/etc.) opinions that we have solicited, one refrain is common amongst the doctors, there just is not that much out there on epileptic spasms. With this as motivation, we have worked with CURE Epilepsy to set up a special $500k grant to fund research on epileptic spasms specifically. This year, all money we raise in Ella’s race will go to fund this grant!  We are so excited for this amazing opportunity!

About Ella’s Race to CURE Epilepsy

Ella, who is the inspiration for this race.

First off, thank you for coming to visit our site! Our 12-year-old daughter Ella has severe epilepsy, and we’re raising money in her honor to help support research in epilepsy. Ella was first diagnosed with epilepsy days after her first birthday. Since that day we have tried approximately 20 different medications, special diets, prolonged hospital stays, surgical consults, second/third/fourth/etc. opinions all in hopes of bringing her seizures under control. Unfortunately, she still has frequent seizures that, when combined with all the medications she takes, have significantly slowed her development. Yet despite the seizures, meds, hospital stays, blood draws, and therapy appointments, Ella’s indelible spirit remains untouched. She continues to be our driving force, attacking each new challenge with a smile. You can learn more about Ella here.

Unfortunately, epilepsy’s reach extends far beyond just Ella, affecting over 3.4 million Americans, with 200,000 more cases being diagnosed each year. Approximately 50,000 deaths occur from seizures and seizure-related causes in the U.S. each year. CURE Epilepsy is the leading nongovernmental agency fully committed to funding research in epilepsy. CURE Epilepsy funds research grants for young and established investigators around the globe, and we believe these are the people who are going to be able to someday cure our Ella. Finding a new and novel treatment and changing technology is currently our only hope for Ella to become seizure-free. CURE Epilepsy is constantly at the forefront of the epilepsy research community, and they are also very fiscally responsible with all the contributions they receive. We are proud to be volunteers for CURE Epilepsy, and Shalee is also a Board Member for the organization. We are very passionate about this cause and believe CURE Epilepsy is the best agency out there to help us and Ella.

Waiver: In consideration of acceptance of this entry, I waive any and all claims for myself and my heirs against officials and sponsors of Ella’s Race for illness and injury which may result

We hope to see you there!

 

 

Race to fund epilepsy research when you join Team CURE Epilepsy at the 2022 TCS New York City Marathon! Represent the 3.4 million Americans who are impacted by epilepsy at this iconic race through all 5 boroughs. 

Team CURE Epilepsy members, will receive:

• Personalized Team CURE Epilepsy online fundraising page
• Team CURE Epilepsy performance shirt & swag bag
• Team social coordinated closer to the event
• Family and friend participation in the Charity Cheer Zone along the course
• Encouragement through inspirational stories and the latest research discoveries in epilepsy
• Special recognition and prizes for top fundraisers

At this time all of our entries have been filled. Check our Event page for more Team CURE Epilepsy events.

Looking for free training resources? TCS New York City Marathon has you covered! Head to their website and view their running resources.

All available slots are currently filled. If more slots become available, we will update this page with registration information.

Looking to challenge yourself and help raise funds for a good cause? We are proud to be a partner with the 2023 Bank of America Chicago Marathon and have secured a limited number of charity spots for runners looking to explore our beautiful hometown neighborhoods, along an iconic 26.2-mile route.

As part of Team CURE Epilepsy, all persons who meet our fundraising requirements will receive:

• Personalized Team CURE Epilepsy online fundraising page
• Team CURE Epilepsy performance shirt & swag bag
• Team social coordinated closer to the event
• Family and friend participation in the Charity Cheer Zone along the course
• Encouragement through inspirational stories and the latest research discoveries in epilepsy
• Special recognition and prizes for top fundraisers

On January 7th, 2023, Joey’s Song Benefit Concert is going to be their biggest and most adventurous benefit concert to date!

There will be an auction with one-of-a-kind items including signed guitars from the performers and VIP experiences. Check back soon for more details.

For more information on the benefit concert visit:
www.joeyssong.org

#TIME2CHANGE

Wednesday October 20th is SUDEP Action Day, a global event whose aim is to bring the epilepsy community together to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and the associated risks SUDEP has on those living with epilepsy. Not everyone with epilepsy is informed about SUDEP, which can increase the chance of worsening seizures, injury or early death.

Join us throughout the week beginning October 18 for important information about SUDEP from researchers, community members, and more. We will be adding SUDEP curated content each day of the week. Please encourage your friends and families to share this information. You can also follow us on Facebook, Instagram, and Twitter for all updates regarding SUDEP Action Day 2021.

It’s #Time2Change what people know about SUDEP, so they can reduce the risk to their loved one living with epilepsy. 

Risks Factors and Ways to Mitigate Risk

Far too many people are unaware of SUDEP, its risk factors, and ways to mitigate these risks.

Help us spread the word and initiate critical conversations about this awful consequence of epilepsy. Share these infographics with your friends and family by posting them on social media.

Webinar | SUDEP and Breathing

A webinar that provides an introduction to basic concepts and terminology for how the respiratory system functions. It also provides evidence for breathing dysfunction caused by seizures and reviews the data for breathing dysfunction as a potential cause as well as a marker for SUDEP, and a possible means to intervene and prevent SUDEP.

Seizing Life Podcast

An important Seizing Life episode featuring Dr. Elizabeth Donner, Staff Neurologist and Director for the Epilepsy Program at Toronto’s Hospital for Sick Kids. Dr. Donner was a 2009 CURE Epilepsy grantee whose research helped identify that the incidence of SUDEP in children with epilepsy was much higher than previously thought, and was actually 1 in 1,000 which is the same as it is for adults.

Dr. Elizabeth Donner provides an overview of SUDEP, including what we currently know about SUDEP, what are the risks and ways to mitigate risks associated with SUDEP, and what research is discovering that can help us find a cure for this devastating outcome of epilepsy.

Webinar | SUDEP and the Heart

Thursday October 21st we had a free live webinar on 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 stream will be available Wednesday October 27th.

Discovery | Dr. Franck Kalume

Research discoveries for SUDEP identified by CURE Epilepsy grantee Dr. Franck Kalume, an Associate Professor in the Departments of Neurological Surgery, Pharmacology, and Global Health at the University of Washington in Seattle.

Learn More About SUDEP

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. Join us as clinicians answer your questions about cutting-edge research and epilepsy treatments.

This CARES event featured epilepsy experts from around the San Francisco area as this event is typically regional, however, this event was broadcasted nationally so that anyone could participate.

Please watch the full CURE Epilepsy CARES virtual event below:

• A panel discussion, featuring epilepsy experts and moderated by CURE Chief Scientific Officer Dr. Laura Lubbers. The panel will discuss the latest in epilepsy research and what it means for patients and families.
• Information about community resources for epilepsy.
• Q&A sessions and small group discussions with epilepsy experts. Capacity is limited for discussions; priority will be given to early registrants.
• Information on cutting-edge therapies and treatments.
• The opportunity to engage with other families and advocacy groups in the epilepsy community.

Opportunities to ask the expert panel your questions about topics, such as:

• Current Treatments & Emerging Therapies
• Surgical Options & Devices
• Clinical Trial Participation
• Managing Your Epilepsy: SUDEP, SAP’s, & Side Effects
• Other topics related to advancements and research in epilepsy

Speakers:

• Brenda Porter, MD (Stanford University)
• Adam Numis, MD (UCSF)
• Michael Rogawksi, MD, PhD (UC Davis)
• Martha Morrell, MD (Stanford University)

Location: Virtual Zoom

FAQs

How can I contact the organizer with any questions?
Please contact us at events@CUREepilepsy.org or 312-255-1801. If you need to contact the organizer on the day of the event, you must email events@CUREepilepsy.org.