Last 2018 Pipeline Conference and Community Day Blog Series Post

This year’s Epilepsy Foundation Pipeline Conference brought together some of the best minds and stakeholders in epilepsy treatment, therapeutic innovation, and product development to discuss new updates in treatment and care. Immediately following the conference, Community Day hosted people with epilepsy, their family and friends, and advocates in a day of education and empowerment.

Miss the start of this blog series? Read Part 1: New Technology in Epilepsy Treatment and Care and Part 2: Partnership Key to Breaking Down Barriers, Finding Solutions now. 

Part 3: Using Your Voice and the Epilepsy Journey

During Community Day, people with epilepsy, healthcare providers, and researchers shared one common message: never settle in your epilepsy journey.

• Steve Kahanic (person with epilepsy and advocate) struggled when finding a medication that worked for him and seizure control. But he did not settle when he was not satisfied with his care. Eventually Steve had the brain surgery that brought him to seizure freedom. He encouraged the audience to never give up and to keep all options, like surgery, in mind on their journey.
• Beth Ruggles (parent advocate with the Epilepsy Foundation Northern California Board of Directors) shared her family’s life with epilepsy. Beth’s oldest daughter started having seizures at 5-months-old and was diagnosed with Lennox-Gastaut Syndrome. Beth’s family tried a variety of treatments and therapies, including the ketogenic diet, several medications, and VNS Therapy^®. Recently, her daughter had success with a clinical trial for Epidolex^®. Her daughter’s seizures have improved with this treatment. (Read about another family’s experience with the Epidolex clinical trial.)
• Kerry Youker's (patient advocate and board chair of the Epilepsy Foundation Northern California) son Tommy started having seizures when he was a baby. Kerry reflected on the frustrations that came with not finding seizure control, especially after brain surgery. But those frustrations helped her shift focus. After years of trying to “fix” Tommy, Kerry started to enjoy every moment she had with him, while still fighting for seizure control. She reminded the audience to stay present in their epilepsy journey because, “the journey is all we have.”
• Bob Smith (chair of the Epilepsy Foundation Board of Directors) remarked that Community Day is a special event because, with the uncertainty that comes with living with epilepsy, families and individuals need a day to get together and lean on each other. His family lived through similar uncertainty. After living with focal seizures from the age of 8, Bob’s son started having tonic-clonic seizures at 25. He was a good candidate for surgery and since then has been seizure free.
• Phil Gattone's (president and CEO of the Epilepsy Foundation) son Philip had his first seizures at 4-years-old. It was the Epilepsy Foundation that provided the answers and resources to get the best care for Philip, who now lives with much more effective seizure control.

In addition to hearing stories of perseverance and hearing updates in epilepsy treatment and care, participants had the chance to get their questions answered by experts, people living with epilepsy, and caregivers.

 

What's next?

Portions of both days of the Pipeline Conference and Community Day were live streamed and recordings are available now. (Watch day 1 and day 2 of the Pipeline Conference and Community Day.) Keep your eyes peeled for shorter videos of individual presentations soon.

Want to learn even more about what was discussed at the Pipeline Conference and Community Day? Watch a recent Facebook Live on what’s new in epilepsy with Dr. Jacqueline French, chief scientific officer at the Epilepsy Foundation.