SUDEP Family Panel

Understanding and Coping with the Risks of SUDEP

This was an exciting event which brought together health care providers, researchers, and advocacy groups to advance our understanding of SUDEP. The event welcomed patients and families living with the risks of SUDEP, and coping with the loss of a family member due to SUDEP.

The seminar features scientific and medical experts on various proposed causes for SUDEP, and new seizure detecting technologies. Dr. Cynthia Harden spoke on the practice guidelines for SUDEP incidence and risk factors, which she developed.

The program included:

  • Understanding and Coping with the Risks of SUDEP, which will teach you how to discuss SUDEP with your doctor
  • Guidelines for Assessing the Risks of Sudden Unexpected Death in Epilepsy (SUDEP), presented by Dr. Harden.
  • A presentation on NYS Legislation for Reporting of SUDEP (Senate Bill S2422)
  • A panel discussion by parents who lost a child to SUDEP

CURE’s Frontiers in Research Seminar Series is made possible by the generous support of Nussenbaum-Vogelstein family.

The Cervantes Family

Meet & Greet with Hamilton’s Miguel Cervantes!

Join us for a Meet and Greet with star of the broadway smash, HAMILTON, Miguel Cervantes, at Fairgrounds Coffee and Tea in Bucktown from 10:00 am – 11:30 am. We are celebrating the launch of the brand new Adelaide’s Blend, named after Miguel’s two-year-old daughter who suffers from a rare childhood epilepsy syndrome.

There is also an opportunity all month long to enter for the chance to win two heavily discounted tickets to see HAMILTON! Attendees of the Meet and Greet event who purchase a bag of Adelaide’s Blend will receive two entries into the drawing. If you are unable to attend, you can share your purchase of Adelaide’s Blend on social media using #MyShotAtEpilepsy to receive one entry through April 30!

20% of sales from each bag of Adelaide’s Blend will be donated to CURE.

Grand Rapids Whitecaps VIP Experience

Don’t throw away your shot to see Miguel Cervantes from Chicago’s HAMILTON production on August 6!

Miguel will be:

  • Singing the National Anthem
  • Throwing a first pitch with his son Jackson
  • Singing the 7th inning stretch

If you want something special this night, there are a limited number of VIP experience package tickets available for $50. The VIP experience is a Field Box seat ticket, hot dog and soda, a photo with Miguel and an autographed Hamilton playbill.

You only need to purchase a VIP ticket if you want the VIP option. If you are coming for the game and don’t want a VIP package you can purchase regular tickets.

If anyone in your group does NOT want the VIP ticket, you will need to order Field Box seats instead of the VIP option. For instance, if you are a group of four and two want VIP tickets and two do not, you’ll need to select two from the VIP drop down in the Field Box area and then two tickets from the Field Box seat drop down.

VIP entry is at 4:45pm. at Gate A.

Money raised from the VIP tickets will go to CURE.

Day of Science in Miami

Day of Science is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy.

Day of Science includes:

  • Welcome by Ann Benschoter, CURE Board Chair
  • Panel of experts sharing the latest in epilepsy research and what it means for patients and families
  • Q&A sessions and small roundtable discussions with epilepsy experts
  • Information on cutting-edge therapies and treatments
  • The opportunity to engage with other families and advocacy groups in the epilepsy community
  • Breakfast options and lunch will be provided

Ask the expert panel your questions about topics, such as:

  • Medical Treatment Options in Epilepsy
  • Epilepsy Genetics
  • Epilepsy Devices and Technology
  • Infantile Spasms and the Childhood Epilepsies

Meet the Day of Science panelists!

Dr. Ian Miller

Ian Miller, MD, Panel Moderator

Research Focus: Treatment of severe pediatric epilepsies, as well as minimally invasive techniques in epilepsy surgery

Dr. Miller is Medical Director of the Comprehensive Epilepsy Program at Nicklaus Children’s Hospital. He is board certified in Psychiatry and Neurology.

Dr. Camilo Garcia

Camilo Garcia, MD

Research Focus: Intractable epilepsy and seizure triggers

Dr. Garcia is Co-Medical Director of the Comprehensive Epilepsy Program at the Cleveland Clinic Florida – Weston. He is board certified in Neurology, Clinical Neurophysiology, and Epilepsy.

Dr. Parul Jayakar

Parul Jayakar, MD

Research Focus: Epilepsy, autism, and intellectual disorders, as well as epilepsy surgery

Dr. Jayakar is Director of the Division of Genetics and Metabolism, Director of Miami Genetic Laboratories, and Section Director of Neurogenetics/Metabolism at Nicklaus Children’s Hospital. She is board certified in Pediatrics, Clinical Genetics, Cytogenetics, and Biochemical Genetics.

Dr. Trevor Resnick

Trevor Resnick, MD

Research Focus: Chronic epilepsy treatment options and neurodiagnostic techniques

Dr. Resnick is Associate Professor of Neurology at the University of Miami School of Medicine, and former Chief of the Department of Neurology at Nicklaus Children’s Hospital. He is board certified in Neurology and Psychiatry.

Dr. Ramses Ribot

Ramses Ribot, MD

Research Focus: Epilepsy and psychiatric comorbidities

Dr. Ribot is Assistant Professor of Clinical Neurology at the University of Miami Miller School of Medicine. He is board certified in Neurology and Psychiatry, as well as Epilepsy.

Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in sponsoring this event.

VOLUNTEER INFO

Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in volunteering. It’s a great opportunity for teens to earn service hours!

Day of Science in Raleigh-Durham

Day of Science is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy.

Day of Science includes:

  • Panel of experts sharing the latest in epilepsy research and what it means for patients and families
  • Q&A sessions and small roundtable discussions with epilepsy experts
  • Information on cutting-edge therapies and treatments
  • The opportunity to engage with other families and advocacy groups in the epilepsy community
  • Breakfast options and lunch will be provided

Expert Panel and Q&A Topics

  • Medical Treatment Options in Epilepsy
  • Epilepsy Genetics
  • Epilepsy Devices and Technology
  • Infantile Spasms and Childhood Epilepsies

Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in sponsoring Day of Science.

VOLUNTEER INFO

Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in volunteering at Day of Science. It’s a great opportunity for teens to earn service hours!

Day of Science in Los Angeles

EVENT OVERVIEW

Day of Science is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy.

Day of Science includes:

  • Panel of experts sharing the latest in epilepsy research and what it means for patients and families
  • Q&A sessions and small roundtable discussions with epilepsy experts
  • Information on cutting-edge therapies and treatments
  • The opportunity to engage with other families and advocacy groups in the epilepsy community

Expert Panel and Q&A Topics

  • Medical Treatment Options in Epilepsy
  • Epilepsy Genetics
  • Epilepsy Devices and Technology
  • Infantile Spasms and Childhood Epilepsies

Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in sponsoring this event.

VOLUNTEER INFO

Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in volunteering. It’s a great opportunity for teens to earn service hours!

1:26 The Art of Epilepsy in Chicago

Join The Hidden Truths Project as they honor Kelly and Miguel Cervantes at the Seventh Annual 1:26 The Art of Epilepsy. In the Spring of 2016, Kelly and Miguel’s daughter, Adelaide, was diagnosed with Infantile Spasms. Since then, Miguel has used his platform as the lead in Chicago production of HAMILTON to spearhead the My Shot at Epilepsy fundraising campaign and began a local and national media tour telling their story and raising awareness and money for CURE.

This will be an evening of inspired artwork created by artists, who span the globe, linked by the common thread of epilepsy. The goal of the night is to provide a platform for this diverse population of individuals to let their voices be heard and their stories told. The art is a segment of their lives that they have complete control over. Something that is predictable. An achievement that can enable them to rise above this disorder. Although each of these artists stories’ are unique, their works become a collective force to combat the injustices, discrimination, and marginalization directed against these individuals, many who continue to live in the shadows of this diagnosis.

Hidden Truths Project’s 1:26 The Art of Epilepsy is extremely pleased to expand these artist’s voices to a national stage, in an effort to build a world of inclusivity, tolerance, and understanding. In collaboration with CURE, 1:26 The Art of Epilepsy will be showcased in Irvine, Chicago, San Francisco and Boston (2019).

The original art will be on display and available for sale the night of the event.

A special thank you to the The Jerome Foundation
for their dedication to the health and well-being of children
and for their incredible donation in support of CURE’s funding of epilepsy research!

If interested in sponsoring, please contact Kuno Chiteji at kuno.chiteji@gmail.com.

1:26 The Art of Epilepsy in Irvine

1:26 The Art of Epilepsy in Irvine

Join The Hidden Truths Project at the Seventh Annual 1:26 The Art of Epilepsy. This will be an evening of inspired artwork created by artists who span the globe, linked by the common thread of epilepsy. The goal of the night is to provide a platform for this diverse population of individuals to let their voices be heard and their stories be told. The art is a segment of their life that they have complete control over. Something that is predictable. An achievement that can enable them to rise above this disorder. Although each of these artists stories’ are unique, their works become a collective force to combat the injustices, discrimination, and marginalization directed against these individuals, many who continue to live in the shadows of this diagnosis.

Hidden Truths Project’s 1:26 The Art of Epilepsy is extremely pleased to expand these artist’s voices to a national stage in an effort to build a world of inclusivity, tolerance, and understanding. In collaboration with CURE, 1:26 The Art of Epilepsy will be showcased in Irvine, Chicago, San Francisco, and Boston (2019).

The original art will be on display and available for sale the night of the event.

A Special Thank You to the
The Jerome Foundation
Dedicated to the health and well-being of children
and for their incredible donation in support of CURE’s funding of epilepsy research!

If interested in sponsoring, please contact Dr. Julie Thompson-Dobkin at hiddentruthsproject@gmail.com.