This past month, CURE attended the Research RoundTable for Epilepsy to provide input on clinical trial design. The roundtable focused on trials aiming to help individuals with rare, genetic forms of epilepsy.
Importantly, government and pharmaceutical representatives listened to patient representatives and clinicians, who gave their thoughts on clinical trial design. The hope of all attending was to optimize clinical trial design for maximum impact, efficiency, and validity, while addressing patient and caregiver needs.
Hearing feedback on the epilepsy research process from those directly affected is critical for getting vital treatments and therapies to those who need them most. These discussions are invaluable within the epilepsy community.
In addition to sharing information about this exciting discussion, this update highlights news and opportunities to engage with CURE, our partners, and the epilepsy community:
- April 25: Webinar and Live Q&A on Transitioning from Pediatric to Adult Epilepsy Care
- Survey: Help Improve Care for Children with Disruptive and Harmful Behaviors
- Time is Running Out: Apply for a CURE Scholarship by April 15!
- Boston: Join us for a Day of Science and an Evening of Art
- The Cotton Family: A Daughter’s Memory Inspires Epilepsy Research and Programming Funding
- New Episodes: Seizing Life, a CURE Podcast
- Upcoming CURE Events
April 25: Webinar and Live Q&A on Transitioning from Pediatric to Adult Epilepsy Care
If your child has epilepsy, the transition of their care from a pediatric to adult neurologist is a critical time. In this month’s free webinar and live Q&A, discover how parents, patients, and doctors can plan the transition. Also, learn the established research guidelines which inform the transition care process. Register now to join us on Thursday, April 25 at 2:00PM CT.
The webinar is supported by the generosity of the BAND Foundation.
Survey: Help Improve Care for Children with Disruptive and Harmful Behaviors
Assist health care providers in better serving children with neurological conditions by participating in this survey of parents and caregivers developed by the Child Neurology Foundation (CNF). The survey closes on Wednesday, April 10.
The survey seeks feedback to better understand managing disruptive or harmful behavior in children with neurologic conditions, including epilepsy. The CNF will share anonymous information from this survey with health care providers, so they can better assist families.
Time is Running Out: Apply for a CURE Scholarship by April 15!
CURE is helping scholars become agents of change for the epilepsy community with Education Enrichment Fund (EEF) scholarships of up to $5,000. The deadline to apply for these scholarships is Monday, April 15.
EEF scholarships support coursework aiming to advance personal knowledge in epilepsy research, health education, awareness, or advocacy. This one-time scholarship is awarded to those living with epilepsy or to family members and caregivers of those impacted by epilepsy.
EEF scholarships are made possible by the generous support of Lundbeck.
Questions? Please reach out to us at firstname.lastname@example.org.
Boston: Join us for a Day of Science and an Evening of Art
Two thought-provoking CURE events are heading to Boston! Join us on Friday, May 10 for the 1:26 The Art of Epilepsy reception and art exhibition. Then on Saturday, May 11, get your epilepsy questions answered by a panel of leading experts at the CURE Day of Science event.
1:26 The Art of Epilepsy
1:26 The Art of Epilepsy is an evening of inspired artwork created by artists spanning the globe, linked by the common thread of epilepsy. Although every artists’ story is unique, the works become a collective force to combat the injustices, discrimination, and marginalization people with epilepsy face. 1:26 The Art of Epilepsy honors the work of Dr. Steven Schachter, Professor of Neurology at Harvard Medical School, and Dr. Kevin Staley, CURE Post-Traumatic Epilepsy Investigator and Chief of Pediatric Neurology at Massachusetts General Hospital.
Day of Science
On Saturday morning ask a panel of clinicians and epilepsy researchers your questions at CURE’s Day of Science. At this free event, panelists will field your questions on the latest research as it relates to new epilepsy treatment options, surgery, genetics, and more. After the panel, enjoy small-group discussions with physicians and researchers over a provided lunch.
Stay tuned: More Day of Science locations around the US will be announced soon!
These events are made possible thanks to the generous support of the BAND Foundation.
The Cotton Family: A Daughter’s Memory Inspires Epilepsy Research and Programming Funding
To honor the life of Vivian Cotton, who suffered from epilepsy and passed away at the young age of 18 months, Shery & David Cotton and Lisa & Michael Cotton have committed $2 million to benefit CURE and our initiatives to find a cure for epilepsy.
Vivian, Lisa and Michael’s daughter, was born prematurely, and as a result she suffered from epilepsy due to hydrocephaly. Vivian was a fighter from the very beginning, but despite all the treatments and medications available, her seizures were never controlled.
This significant gift will enhance a wide range of CURE activities and further energize development of innovative research and programming to one day lead to a cure for epilepsy. We’re so grateful to the Cottons for their legacy gift in memory of Vivian and are honored they believe in our mission to create a world without epilepsy through supporting research.
New Episodes: Seizing Life, a CURE Podcast
Catch up on the latest episodes of the CURE podcast Seizing Life! In March, we explored:
- CBD: A Promising Treatment Option, with Dr. Laura Lubbers
- Epilepsy Surgery: Is it right for you?, with Howard Zwirn
- SUDEP: What You Need to Know, with Tom Stanton
- School Nurse Shortages: The Challenges Students and Families Face, with Laurel Henson and Wendy Katten
You can find Seizing Life on your favorite podcasting app or on our website, www.seizinglife.org.
Upcoming CURE Events
April 13: 5K Strides for Epilepsy Run/Walk – Salisbury, MD
April 25: Webinar: Transitioning from Pediatric to Adult Care – Online
May 10: 1:26 The Art of Epilepsy Reception and Art Exhibition – Boston, MA
May 11: Day of Science – Boston, MA