People with epilepsy are afraid to talk to their doctors. How California can change that.

In response to an opinion letter featured last week, Opinion: Lots of people lie to their doctors. My father did — with tragic results (April 25, 2024), the Epilepsy Foundation Los Angeles’ op-ed was published in today’s issue of the Los Angeles Times: People with epilepsy are afraid to talk to their doctors. How California can change that. The op-ed is available online and the content of Epilepsy Foundation’s op-ed is provided below.

SPECIAL CALL TO ACTION: SIGN THE LETTER IN SUPPORT OF SB 357

We at the Epilepsy Foundation Los Angeles were heartbroken to read Paul Karrer’s article about his father’s death.

His story, however, is a tragic outlier. Adults with well-controlled epilepsy are involved in fewer crashes than drivers with many other medical conditions. One study found that a fraction of 1% of all car crashes are caused by a person with epilepsy.

People with uncontrolled epilepsy or who are not taking their medication as prescribed should not be driving. People should also be honest with their doctors — but California is one of only six states that requires doctors to report anybody with epilepsy to the government, making many afraid to speak openly to their physicians.

That’s why we support Senate Bill 357 by Senator Anthony Portantino (D-La Cañada Flintridge). SB 357 would replace an ineffective mandatory reporting system with one that promotes honest dialogue, while maintaining the DMV’s authority to withhold or suspend a license from a potentially unsafe driver.

Too many people with epilepsy live in fear and shame of their condition. As we learned from Karrer’s piece, making people afraid to talk about their seizures with their own doctors can have tragic consequences.

David Parker and Rebekkah Halliwell, Los Angeles

The writers are, respectively, a board member and the executive director of the Epilepsy Foundation Los Angeles.

April 29, 2024

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The Epilepsy Walk Los Angeles Returns to The Rose Bowl Sunday, April 28, 2024

5K Walk / Run and Fair in Support of Care, Advocacy, Research and Awareness

Pasadena, CA – The Epilepsy Foundation Los Angeles announces the return of the Epilepsy Walk Los Angeles at Pasadena’s Rose Bowl on Sunday, April 28, 2024 from 8:30 AM to 12:30 PM. This annual 5K Walk / Run, hosted by Audrey Kaller (Ambassador for the Epilepsy Foundation Los Angeles) and Josh Duhamel (“Transformers,” “Shotgun Wedding”) gathers the community in solidarity for a cause deeply affecting approximately 3.4 million Americans. The walk casts a vital spotlight on this prevalent yet frequently overlooked condition, emphasizing the startling reality that 1 in 26 people will face epilepsy in their lifetime.

Audrey Kaller, Ambassador for Epilepsy Foundation Los Angeles, shares her personal connection to the cause: “For a while, I thought epilepsy was just a part of my childhood, but it stayed with me as I grew up,” says Kaller. “When I looked around for role models and found none, I decided to become one myself. Even though I haven’t had a seizure in three years, I’ve been focused on changing how people view epilepsy. I’ve learned that I can’t control my seizures, but I can control what I do about it. Whether I’m lobbying on capitol hill, speaking at college campuses, the Epilepsy Walk is another big way I make a difference. Every step we take brings us closer to understanding and accepting epilepsy more.”

The Epilepsy Walk Los Angeles is dedicated to uniting the community, raising awareness, and educating on epilepsy. Here’s what to expect:

  • Family Activities: Enjoy the Pop-up Village for kids with arts and crafts, Mattel’s Play It Forward kid zone, and the Little Library & Lounge featuring authors with epilepsy. A dedicated Teen Zone will also have a photo booth, bracelet making, and games, specifically designed as a welcoming space for teens with epilepsy and their siblings to build friendships.
  • Interactive and Educational Experiences: Engage with the Wishing Wall, learn at the Wellness Institute, and check out Waymo’s driverless car. Don’t miss the epilepsy education booths empowering people with knowledge on their quest for seizure freedom.
  • Fitness and Wellness: Participate in Barry’s Bootcamp classes, Box Union warm-ups, and calming sessions of guided meditation and yoga. Additionally, Pure Patch will be promoting sleep hygiene by giving away samples of their wearable nutrition patches.
  • Music and Entertainment: Experience live music from DJ HAPA and special guests Landis Wiedner (What the EF podcast host) and Greg Grunberg (founder of Talk About It).
  • Shopping and Dining: Explore a diverse marketplace featuring Chamberlain Coffee’s new Coffee Truck and peruse through multiple art galleries to discover and purchase artwork made by people with disabilities.
  • Community and Advocacy: Get involved in legislative advocacy campaigns, fight for the rights of people with epilepsy and demand increased funding to support epilepsy research.
  • Expert Insights: Visit the interactive walk-thru 15’ x 20’ BRAIN exhibit and meet the epilepsy specialists from USC Keck School of Medicine, Cedars-Sinai, Cedars-Sinai Guerin’s Children’s Hospital, UCLA and Children’s Hospital Los Angeles.

Proceeds from the event will benefit comprehensive programs, including support services, advocacy, and initiatives aimed at improving the lives of the nearly 160,000 people affected by epilepsy in the greater Los Angeles region.

Registration for the event is $25 per person for ages 2 and older. Participants can sign up for the walk at www.EpilepsyWalkLA.org. Online pre-registration closes at noon on Friday, April 26, 2023. Tickets will also be available on the day of the event. Participants can also join a team, such as Audrey’s team, by visiting https://www.classy.org/team/566218. Join the Epilepsy Foundation Los Angeles in the fight to End Epilepsy.

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About The Epilepsy Foundation Los Angeles:

Established in 1957 as a 501(c)3 charitable organization, the Epilepsy Foundation Los Angeles is leading the fight to END EPILEPSY® and the burden of seizures.  Our fundraising and community efforts support care, advocacy and education, today, while investing in research and hope for tomorrow.  Visit us online at EpilepsyLosAngeles.org