Uncategorized – Epilepsy Foundation Los Angeles

National Epilepsy Awareness Month

Posted on 2025-10-312025-11-05 by Lily

Recognizing National Epilepsy Awareness Month

November is National Epilepsy Awareness Month (NEAM), and the call to action is “All In for National Epilepsy Awareness Month.” This year’s theme is about showing up and doing what we can to support epilepsy awareness. Each of us commits to taking action for the epilepsy community, by learning more about epilepsy, sharing a story, wearing purple, or supporting someone with epilepsy. Together, we can build a stronger, more informed community.

Being All In doesn’t mean doing everything; it means doing something to raise awareness and reduce stigma. Every action counts, and together, we can make a difference. We ensure that no one faces epilepsy alone.

Go All In for NEAM

This November, go All In for National Epilepsy Awareness Month. Join the Epilepsy Foundation of America and our partners in taking action big and small. Start impactful conversations, get involved to help keep our communities safe, and push for progress through advocacy and research. Together, we’re building a stronger future for everyone affected by epilepsy.

Share your Story

Our blog is a place to share your experiences with epilepsy and the difficulties you’ve overcome. Your epilepsy story is powerful and can give people hope, empowerment, and safety. Submit story.

Sign Up for a Free Seizure First Aid Training

The Seizure Recognition and First Aid certification training provides information to increase the knowledge, skills, and confidence in recognizing seizures and safely administering seizure first aid. Encourage your friends and family to register for a free seizure first aid training in honor of National Epilepsy Awareness Month. You and your family can also register our for our seizure first aid trainings in Spanish.

Share on Social Media

Social media can be a powerful tool to leverage in your epilepsy journey. Whether you’re a person with epilepsy or a caregiver, it can connect you with others going through the same things you are. Use #NEAM2025 and #AllInForEpilepsy and share facts, information, or your personal experiences with your followers on social to spread awareness during this special month. You can also encourage others to share the Epilepsy Foundation’s posts and re-share our content to help raise awareness! Connect, share, and educate on social media.

Participate with Your Local Community

Get involved and make a difference right in your own neighborhood. Find your local Epilepsy Foundation and sign up for NEAM activities tailored to your community. Whether it’s a walk, fundraiser, educational event, or volunteer opportunity, there’s something meaningful for everyone.

Quick Facts About Epilepsy

Sharing facts about epilepsy helps raise awareness and stop stigma surrounding seizures. By educating the public, we can promote understanding and encourage support for individuals living with epilepsy. Knowledge empowers communities to provide better care, offer assistance during seizures, and create a more inclusive and compassionate environment. We’ve compiled some facts about epilepsy and seizures for you to share on social media or with your friends and family to help them learn more.

1 in 10 people will have a seizure and 1 in 26 will develop epilepsy during their lifetime.
There are approximately 3.4 million people living with epilepsy in the United States; about 456,000 of them are children.
Epilepsy is a neurological disorder that can affect any one of us regardless of race, age, or gender.
Seizures are a symptom of epilepsy. Not all seizures are the same. Many people with epilepsy have more than one type of seizure.
Misunderstanding and misinformation about seizures contribute to continued feelings of stigmatization and negative outcomes for people with epilepsy.¹
People with epilepsy may experience “felt” stigma, which leads to shame about their condition and fear of discrimination if they talk about it.²
Felt stigma was linked to higher seizure frequency, younger age at epilepsy onset or longer duration, lack of knowledge about epilepsy, and younger age.⁵
Felt stigma can reduce the quality of life even when seizures are well controlled.⁶

References: Epilepsy & Behavior 2015 ¹, Epilepsia 2007 ², Epilepsia 2022 ⁵, Epilepsy & Behavior 2021 ⁶

We’re All In

Epilepsy affects everyone, everywhere. Here’s how we continue to help the epilepsy community:

Programs and Education

From live On-Demand certification courses to 30-minute basic steps training, our seizure first aid program educates the public on approved procedures for recognizing seizures and responding to someone having a seizure. We will be hosting a Seizure Recognition and First Aid Certification Training in recognition of NEAM on November 4.

Advocacy

We advocate to improve the lives of people affected by epilepsy through education, advocacy, research, and connection. Now more than ever, it is critical for the entire epilepsy community to SPEAK UP and speak with ONE VOICE to try and protect epilepsy programs and research. Take action through our tool to email your members of Congress about your concerns. We strongly encourage advocates to personalize these messages by sharing information about their own experiences as a member of the epilepsy community. You can take action on a variety of issues, including funding for epilepsy research and programs.

Research and Innovation

Our epilepsy research ecosystem covers all parts of therapy, from ideas to market. It includes innovation programs that test new concepts; engagement programs that improve communication; digital tools that support research infrastructure; and funding that supports young researchers.

Epilepsy Community Unites to Oppose Cuts to Federal Epilepsy Programs

Posted on 2025-04-162025-04-16 by Lily

The 118 undersigned organizations – representing people living with epilepsy; caregivers and loved ones; physicians, care providers, and epilepsy centers; epilepsy researchers; and others – are united in opposition to recent actions by the Administration and Congress to cut vital federal epilepsy programs. As the fourth most common neurological condition in the world and with nearly 3.4 million Americans living with active epilepsy, we must be doing more – not less – to understand and treat epilepsy, develop cures, improve the quality of life for people with epilepsy, and increase public awareness. We urge policymakers to reverse these cuts and ensure that fundamental epilepsy public health and research programs are maintained:

Centers for Disease Control and Prevention (CDC)’s Epilepsy Program

At the beginning of April, Reductions in Force (RIF) notices were issued to staff within the CDC’s National Center for Chronic Disease Prevention and Health Promotion Epilepsy Program. The CDC Epilepsy Program is the only public health program related explicitly to epilepsy with a national scope and community programs that examine, test, and share strategies to improve the lives of people with epilepsy and their loved ones. This critical program supports seizure recognition and first aid training, including for school personnel; research to better understand the burden and risk factors of epilepsy; self-management programs that improve the health and well-being of people with epilepsy; and Project ECHO so that epilepsy specialists can help primary care doctors in rural communities.

Congressionally Directed Medical Research Programs (CDMRP)

In its final FY25 funding bill, Congress cut appropriations for the Congressionally Directed Medical Research Program (CDMRP) by 57%. This has completely eliminated specific funding for research related to Tuberous Sclerosis Complex (TSC), post-traumatic epilepsy, and traumatic brain injury (TBI) and psychological health. The elimination of this funding will have harmful impacts and set back innovation. TBI is a leading and significant form of injury in service people, especially those in combat and training environments, and it can lead to post-traumatic epilepsy for 50% of those with severe TBI. For many years, these research programs have funded cutting-edge research to better understand and address these neurologic conditions that can affect Service Members, Veterans, and their families. These cuts must be restored to continue progress in epilepsy research.

National Institutes of Health (NIH) and National Institute of Neurological Disorders and Stroke (NINDS)

Within NIH, several institutes fund epilepsy-related research which has helped better understand, diagnose, and treat epilepsy—most notably, the National Institute of Neurological Disorders and Stroke (NINDS). In the past several weeks, nearly 20% of the NINDS staff have been impacted by RIFs, including people dedicated to epilepsy. Beyond a loss of expertise, we also understand that there will be significant cuts to both funding opportunities and contracts. We are extremely concerned about the impact of these cuts on current and future epilepsy research activities and know they are impeding our shared goal of curing epilepsy.

Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)

The ACHDNC was also terminated in early April. For more than 20 years, this committee has governed the Recommended Uniform Screening Panel (RUSP), which helps to ensure that newborns have access to screening, diagnosis, and intervention for serious medical conditions. Some conditions on the RUSP list can cause seizures and there are many other rare disorders that cause seizures and epilepsy in infants and children that could be added. We are extremely concerned about the impact the dissolution of the ACHDNC will have on infants, children, and their caregivers in the rare epilepsy community. The dissolution of this committee completely terminates any possibility of enhancement, expansion, and improvement of the US’s ability to reduce preventable suffering and deaths of infants. We urge that it be reinstated as soon as possible.

These actions will halt progress in preventing, diagnosing, treating, curing, and managing epilepsy. These changes are happening at a time when many other significant threats are looming for people with epilepsy and their families, including possible cuts to Medicaid and the possible dismantling of the U.S. Department of Education. About 40% of people with epilepsy rely on Medicaid for access to healthcare and long-term services and supports. Meanwhile, the U.S. Department of Education is vital to ensuring that the rights of students with disabilities are protected and enforced.

Epilepsy looks different for each person. There are many types of seizures and syndromes, and epilepsy affects people throughout their lifespan with varied causes and associated conditions. Most importantly, delayed recognition and inadequate treatment increases a person’s risk of seizures, brain damage, disability, and death. Epilepsy and/or seizures impose an annual economic healthcare burden of $54 billion in the U.S. This is why epilepsy research and programs are so critical to the public health and economic health of our nation.

The epilepsy community is devastated by these cuts, and we need action now. We call on policymakers to restore funding and staffing for these vital programs. Please contact Laura Weidner, Chief Advocacy and Government Relations Officer for the Epilepsy Foundation at lweidner@efa.org or Johanna Gray, Deputy Director of the National Association of Epilepsy Centers at jgray@artemispolicygroup.com with any questions.

National and International Organizations

AHC Foundation
American Epilepsy Society
Angelman Syndrome Foundation
Angels of Epilepsy, Inc.
Autism Faith Network
CACNA1A Foundation
Child Neurology Foundation
Coalition to Cure CHD2
COMBINEDBrain Inc.
CSNK2B Foundation
CURE Epilepsy
Cure KCNH1 Foundation
CureSHANK
Danny Did Foundation
Developmental and Epileptic Encephalopathies Project (DEE-P Connections)
DLG4 SHINE Foundation
Doose Syndrome Epilepsy Alliance
Dravet Syndrome Foundation
Dup15q Alliance
Epilepsies Action Network (EAN)
Epilepsy Alliance America
Epilepsy Foundation of America
Epilepsy Information Service, Wake Forest School of Medicine
Epilepsy Wellness Advocates
FamilieSCN2A Foundation
Foundation for Angelman Syndrome Therapeutics
GABA-A Alliance
GNB1 Advocacy Group, Inc.
GRIN2B Foundation
Hidden Truths Project
Hope for HIE
Hope for ULD
International Foundation for CDKL5 Research
International League Against Epilepsy – North America
International SCN8A Alliance
Joanna Sophia Foundation
KCNQ2 Cure Alliance
KPTN Alliance
Lightning and Love Foundation
National Association of Epilepsy Centers
NORSE Institute
Partners Against Mortality in Epilepsy (PAME)
Pediatric Epilepsy Research Consortium
Pediatric Epilepsy Surgery Alliance
Phelan-McDermid Syndrome Foundation
Rare Epilepsy Network (REN) Coordinating Committee
Ring14 USA
Ring20USA
Schinzel-Giedion Syndrome Foundation
STXBP1 Foundation
Tatton Brown Rahman Syndrome Community
TESS Research Foundation
The Cute Syndrome Foundation
The Mark Shaparin Foundation
The Rory Belle Foundation
TSC Alliance
v-ATPase Alliance

State and Local Organizations

Beta Spectrin Foundation
Empowering People’s Independence
EPIC LI/Epilepsy Foundation Long Island
Epilepsy Advocacy Network
Epilepsy Alliance Louisiana
Epilepsy Alliance North Carolina
Epilepsy Foundation Alabama
Epilepsy Foundation Alaska
Epilepsy Foundation Arizona
Epilepsy Foundation Arkansas
Epilepsy Foundation Central & South Texas
Epilepsy Foundation Eastern PA
Epilepsy Foundation Florida
Epilepsy Foundation Greater Orange County
Epilepsy Foundation Indiana
Epilepsy Foundation Iowa
Epilepsy Foundation Los Angeles
Epilepsy Foundation Louisiana
Epilepsy Foundation Maryland
Epilepsy Foundation Maryland Chapter
Epilepsy Foundation Metro D.C.
Epilepsy Foundation Mississippi
Epilepsy Foundation Montana
Epilepsy Foundation Nebraska
Epilepsy Foundation Nevada
Epilepsy Foundation New England
Epilepsy Foundation New Jersey
Epilepsy Foundation New Mexico
Epilepsy Foundation North Carolina
Epilepsy Foundation North Dakota
Epilepsy Foundation of Connecticut
Epilepsy Foundation of Delaware
Epilepsy Foundation of Greater Chicago
Epilepsy Foundation of Idaho
Epilepsy Foundation of Kentuckiana
Epilepsy Foundation of Michigan
Epilepsy Foundation of Minnesota
Epilepsy Foundation of Missouri and Kansas
Epilepsy Foundation of Northern California
Epilepsy Foundation of Northeastern New York
Epilepsy Foundation of San Diego County
Epilepsy Foundation of Southeast Tennessee
Epilepsy Foundation of Virginia
Epilepsy Foundation of Wisconsin
Epilepsy Foundation Ohio
Epilepsy Foundation Oklahoma
Epilepsy Foundation Oregon
Epilepsy Foundation South Carolina
Epilepsy Foundation South Dakota
Epilepsy Foundation Texas
Epilepsy Foundation Utah
Epilepsy Foundation Washington
Epilepsy Foundation West Virginia
Epilepsy Services of New Jersey
Epitome of Epilepsy nonprofit organization
HardyHandz Foundation
Joey’s Song
Rea of Hope for a Cure Foundation
Sociedad Puertorriqueña de Epilepsia
South Carolina Advocates For Epilepsy
The Epilepsy Institute DBA the Epilepsy Foundation of Metro NY

AAN, AES and EFA issue position statement on seizures and driving safety

Posted on 2025-04-102025-04-10 by Lily

The American Academy of Neurology (AAN), the American Epilepsy Society (AES) and the Epilepsy Foundation of America (EFA) have issued a consensus position statement on seizures, driver licensure and medical reporting. The position statement is published on March 12, 2025, online in Neurology^®, the medical journal of the American Academy of Neurology (AAN). It was developed with the Ethics, Law, and Humanities Committee, a joint committee of the AAN, the American Neurological Association and the Child Neurology Society.

This statement updates a 1994 consensus statement by the AAN, AES, and EFA as well as a 2007 AAN position statement.

“Driving provides independence for work and daily tasks, but there is a modest increase in the risk of car accidents associated with seizures,” said author Benjamin Tolchin, MD, of the Yale School of Medicine in New Haven, Connecticut, and a Fellow of the American Academy of Neurology. “Most people with epilepsy can drive safely when seizures are controlled by medication, and for some, seizures stop over time. This position statement aims to improve the management of this complex personal, medical, governmental and societal issue.”

The position statement says for people with seizures, a medical advisory board should conduct an individualized risk assessment and require a seizure-free period of three months or longer prior to driving, depending on the features of a person’s individual case. Driving should be paused during tapering of a drug and following discontinuation of a medication if another drug is not replacing it.

“Neurologists diagnose and treat epilepsy, and are experts in brain health,” said American Academy of Neurology President Carlayne E. Jackson, MD, FAAN. “With their expertise in managing seizures, this position statement can help medical professionals and government officials advise people who want to drive safely, ultimately improving their quality of life.”

The position statement says driver licensing decisions should be made by governmental regulatory bodies, rather than health practitioners. Additionally, health practitioners should be allowed, but not required, to report drivers who pose an elevated risk, noting that mandatory reporting by health care practitioners does not reduce accidents or fatalities but does increase the likelihood of people driving without a license and withholding information about seizures from their doctors.

“Through collaboration with multiple organizations, committees, and patient representatives, we have developed a framework that reflects a balanced approach to safety and patient independence and prioritizes individualized risk assessment while ensuring that regulatory bodies—not healthcare providers—make licensing decisions,” said author Charuta Joshi, MBBS, MSCS, CSCN(EEG), and a Fellow of the American Epilepsy Society. “This position statement and the consensus behind it underscore the importance of medical advisory boards in assessing seizure-related driving risks while recognizing the unintended consequences of mandatory physician reporting.”

The position statement says alternative methods of transportation and accommodations should be provided by government agencies for people whose driving privileges are restricted due to medical conditions.

“Driving is a central factor for quality of life, helping people with epilepsy maintain employment, access needed healthcare, and engage socially,” said Bernice Martin Lee, Chief Executive Officer of the Epilepsy Foundation of America. “The new recommended position statement is data-driven and creates a thoughtful balance between personal independence and well-being and public safety.”

About the American Academy of Neurology The American Academy of Neurology is the leading voice in brain health. As the world’s largest association of neurologists and neuroscience professionals with more than 40,000 members, the AAN provides access to the latest news, science and research affecting neurology for patients, caregivers, physicians and professionals alike. The AAN’s mission is to enhance member career fulfillment and promote brain health for all. A neurologist is a doctor who specializes in the diagnosis, care and treatment of brain, spinal cord and nervous system diseases such as Alzheimer’s disease, stroke, concussion, epilepsy, Parkinson’s disease, multiple sclerosis, headache and migraine.

About the American Epilepsy Society Founded in 1936, the American Epilepsy Society (AES) is a medical and scientific society whose members are dedicated to advancing research and education for preventing, treating and curing epilepsy. AES is an inclusive global forum where professionals from academia, private practice, not-for-profit, government, and industry can learn, share, and grow to eradicate epilepsy and its consequences.

About the Epilepsy Foundation of America The Epilepsy Foundation is a national nonprofit organization dedicated to improving the lives of people affected by epilepsy through education, advocacy, research, and connection. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding epilepsy research and supporting epilepsy investigators and specialists in their early careers. In partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy and trained more than 600,000 people in seizure recognition and first aid. The Epilepsy Foundation continues to focus on serving the epilepsy community through advocacy, education, direct services, and research for new therapies. To learn more visit epilepsy.com or call 1.800.332.1000; in Spanish at 866.748.8008 or laepilepsia.org. Follow us on Facebook, Instagram, Twitter, LinkedIn, TikTok, and YouTube.

About the American Neurological Association From advances in stroke and dementia to movement disorders and epilepsy, the American Neurological Association has been the vanguard of research since 1875 as the premier professional society of academic neurologists and neuroscientists devoted to understanding and treating diseases of the nervous system. Its monthly Annals of Neurology is among the world’s most prestigious medical journals, and the ANA’s Annals of Clinical and Translational Neurology is an online-only, open access journal providing rapid dissemination of high-quality, peer-reviewed research related to all areas of neurology. The acclaimed ANA Annual Meeting draws faculty and trainees from the top academic departments across the U.S. and abroad for groundbreaking research, networking, and career development. For more information, visit www.myana.org or @TheNewANA1

About the Child Neurology Society The Child Neurology Society (CNS), established in 1972, is the leading nonprofit association for pediatric neurologists worldwide. With nearly 3,000 members, CNS advances child neurology through education, advocacy, and mentorship, striving for equitable care for children with neurological disorders and recognizing those who care for them.

Epilepsy Walk Los Angeles Postponed Until Fall 2025

Posted on 2025-02-132025-02-14 by Lily

Epilepsy Walk Los Angeles Postponed Until Fall 2025

The Epilepsy Foundation Los Angeles team, along with our board of directors, shares our deep sadness over the devastation caused by the January 2025 fires, which affected so many in the greater Los Angeles area. Family, friends, colleagues, classmates, and countless members of our own epilepsy community have been impacted, and the journey to recovery is just beginning.

In consideration of this, and out of great care and respect for everyone affected, as an organization we have made the difficult decision to postpone the Epilepsy Walk Los Angeles until Fall 2025.

While we won’t be gathering for the Epilepsy Walk until then, please know that the Epilepsy Foundation Los Angeles remains your partner in your epilepsy journey. From summer camps and support groups to education, training, and specialist referrals, we are committed to supporting and connecting with those impacted by epilepsy. We encourage you to reach out for assistance or to get involved in any of our programs.

Frequently Asked Questions

Why was the Epilepsy Walk Los Angeles rescheduled?

The decision to reschedule it was made out of care, respect, and support for our greater Los Angeles community following the devastating January 2025 fires. Many members of our epilepsy community have been impacted, and we want to prioritize their recovery and well-being.

When and where will the Walk take place now?

Fall 2025. We will share the exact date and location within Los Angeles County as soon as it is confirmed.

What happens to my registration?

All current registrations will automatically be transferred and valid for the Walk now happening in Fall 2025.

What if I already raised funds for the Walk scheduled in March?

Thank you for your support! All funds raised will still support our mission and local epilepsy programs and services. You can continue fundraising, and your team’s progress will continue to be reflected for the new event.

Will my team still be registered?

Yes! Your team and fundraising page will remain active for the Walk being held in Fall 2025. You can continue to recruit team members and raise funds leading up to the new date.

Can I get a refund if I can’t attend?

Registration fees and donations are non-refundable, but your registration will remain valid for the new Walk date. If you would like to discuss with a member of the team, please contact Help@EpilepsyLosAngeles.org or 310-670-2870

What can I do in the meantime to support the epilepsy community?

Even though the Walk is rescheduled, our mission continues! You can:

Continue fundraising to support epilepsy programs.
Join our year-round events like support groups, education programs, and summer camps.
Advocate and spread awareness about epilepsy in your community.
Follow us on social media for updates and ways to stay involved.

How can I stay updated on the new Walk date?

We will share updates through email, our website, and social media. Be sure to be subscribed to our ENEWS, check out EpilepsyLosAngeles.org or find us at social (@EpilepsyLosAngeles) for the latest information.

Can I still donate to the Epilepsy Walk Los Angeles?

Yes! Donations can still be made to support epilepsy programs and services. Visit EpilepsyWalkLA.org to contribute.

What if I already reached a fundraising milestone—will it still count?

Yes! Any fundraising you’ve done will count toward your total for the rescheduled Walk. Incentives and rewards will still apply.

Can I continue fundraising even though the Walk is rescheduled?

Absolutely! The extra time allows you to keep raising awareness and funds for epilepsy. Your team page will remain open, and you can still receive donations.

What happens to offline donations (cash/checks) I’ve already turned in?

All offline donations will still be applied to your fundraising total. If you have additional donations to submit, please mail them to 5777 W. Century Blvd, #820, Los Angeles, CA 90045 or contact Help@EpilepsyLosAngeles.org for assistance.

Can I still register a new team for the Walk?

Yes! New teams and participants can continue registering for the rescheduled Walk. Visit EpilepsyWalkLA.org to sign up.

What if I registered multiple people—do I need to do anything to keep them registered?

No action is needed. All registrations will automatically transfer to the new Walk date.

How can I help those affected by the fires?

We encourage community members to support local relief efforts. If you’d like to contribute, we can provide recommendations for trusted organizations offering assistance.

Will there be other epilepsy-related events before the Walk?

Yes! The Epilepsy Foundation Los Angeles hosts events year-round, including educational programs, support groups, and advocacy initiatives. Visit EpilepsyLosAngeles.org to learn more.

Who can I contact if I have more questions? What if I have a question not listed here?

We’re happy to help! Reach out to us at Help@EpilepsyLosAngeles.org or 310-670-2870 for any additional questions.

Gov. Newsom maintains a discriminatory policy that impacts people with epilepsy | Opinion

Posted on 2024-10-302024-10-31 by Lily

BY DAVID PARKER SPECIAL TO THE SACRAMENTO BEE OCTOBER 30, 2024 11:06 AM

In his second inaugural address, Gov. Gavin Newsom committed California to righting historical wrongs, and to “confront our errors with humility and conviction.” But he just missed an easy opportunity to end nearly seven decades of discrimination by vetoing the repeal of an outdated 1957 law originally established to enforce California’s prohibition on drivers’ licenses being issued to anyone “who is insane or feeble-minded or an idiot, imbecile or epileptic.”

Senate Bill 357, authored by Sen. Anthony Portantino, D-Burbank, would have finally ended California’s shameful decades-old policy that all adults and teenagers with epilepsy must be reported to the government. The failure of the legislation revealed how hard it can be to correct the mistakes of the past, especially on lesser-known issues.

It has been 30 years since the American Academy of Neurology, American Epilepsy Society and Epilepsy Foundation of America issued a landmark statement that “there was unanimous agreement that physicians should not be required to report their patients” to the Department of Motor Vehicles. Yet California remains one of only six states that requires doctors to report patients with epilepsy to their local health office, which then shares the patient’s name and diagnosis with the DMV — whether they intend to drive or not.

SB 357 had a simple goal of adopting the longstanding national consensus and ending mandatory reporting of people with epilepsy. The bill would have brought California in line with most of the rest of the country in giving doctors the authority to report any patient who might be unsafe to drive, rather than mandating that absolutely everyone diagnosed with epilepsy be reported to the government.

To promote public understanding of the shift in policy, SB 357 also directed the DMV to produce a data-driven report on drivers with epilepsy, ensuring that future discussions about the issue would be based in evidence, not preconceived notions. The bill also included sensible liability provisions, so doctors could have open conversations with their patients with epilepsy, preserving a critical relationship often undermined by the current mandatory reporting regime.

The California Legislature unanimously passed SB 357. Newsom said no.

In his veto message Newsom stressed the need “to maintain proper safeguards for public safety.” But there’s no compelling evidence that the discriminatory policy the veto maintains does anything to promote public safety.

One study has estimated that .01% of accidents were caused by people with epilepsy — that’s one in ten thousand. Epilepsy remains subject to mandatory reporting simply because it’s always been subject to mandatory reporting, despite what the data shows.

There’s also no evidence that mandatory reporting makes a state’s roads any safer. What the data does show is that fear of being reported to the government makes people with epilepsy afraid to be completely open and honest with their physicians.

The bill Newsom vetoed would not have imposed any new limits on California’s ability to keep unsafe drivers off the road. In fact, the bill would have maintained the DMV’s total authority to withhold a license from a driver they deemed unsafe. So when Newsom, who has made “California for All” a motto of his administration, talks about epilepsy in terms of “public safety,” all he’s doing is endorsing an ancient prejudice that people with epilepsy are inherently dangerous.

In that same inaugural speech, Newsom vowed that “California commits itself to the process of getting it right for the next generation.” I hope so. I don’t want my 10-year-old daughter, Vivian, to grow up in a world where she’s made to feel ashamed of her epilepsy.

A lot has changed for people with epilepsy since 1957, including major advances in the treatment of seizures. Epilepsy is not uncommon, affecting 1 in 26 people. Ignorance about epilepsy, however, remains widespread. We will never move past old prejudices if we don’t change the laws built upon them.

Newsom is right when he calls California “a state of dreamers and doers.” That’s why we will bring this repeal back to Sacramento every year until he joins us, in his own words, in “paving the way for rights and freedom to prevail.” David Parker is on the board of Epilepsy Foundation Los Angeles, which sponsored Senate Bill 357.

David Parker is on the board of Epilepsy Foundation Los Angeles, which sponsored Senate Bill 357.

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

Posted on 2024-04-292024-04-30 by Rebekkah Halliwell

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

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

Posted on 2024-04-222024-04-22 by Lily

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

Driving Bill Passes State Senate Judiciary Committee

Posted on 2023-04-252023-04-26 by Rebekkah Halliwell

For Immediate Release: April 26, 2023
Contact: Lerna Shirinian, (818) 409-0400

Senator Portantino Bill Protecting Drivers with Epilepsy Approved by Senate Judiciary Committee

Sacramento, California – Senate Bill 357, authored by Senator Anthony J. Portantino (D – Burbank) was approved by the Senate Judiciary Committee. The bill gives doctors the discretion to report personal conditions they believe will impair a patient’s ability to drive. It further removes language that discriminates against specific conditions, including epilepsy.

“The discriminatory practice of mandatory reporting in California needs to be addressed,” stated Senator Portantino. “SB 357 protects drivers with epilepsy by improving the patient-physician relationship and allows individuals affected by epilepsy to seek the care they need without fear of losing their driving licenses.”

Epilepsy is the fourth-most common neurological disorder, affecting more than 3.4 million Americans and more than 425,000 Californians. Yet here in California, a 1957 state law discriminates against drivers with epilepsy and other conditions by requiring physicians to automatically report these drivers to the Department of Motor Vehicles. Research has shown that these requirements often result in patients withholding crucial information from their physicians and not seeking the care they need. This is due to fear of losing their right to drive. When a person with epilepsy withholds critical information from their doctor, they jeopardize their access to appropriate care, risking an increase of seizure activity or even a loss of seizure control.

SB 357 will:

Give doctors the discretion to report conditions they believe will impair a patient’s ability to drive, by removing language that discriminates against specific conditions, including epilepsy;
Allow but not require doctors to make such reports;
Protect the doctor-patient relationship by providing immunity for physician for either reporting or not reporting patients.

SB 357 will also require the California Department of Motor Vehicles (DMV) to publish a report by 2027 on the differences in patterns of reporting and crash rates under a voluntary reporting system. The bill will add a sunset on the voluntary reporting system for 2029.

“We thank Senator Portantino for authoring this important legislation that will protect the doctor-patient relationship, improve access to care for people with epilepsy and end decades of discrimination against the more than 425,000 Californians living with epilepsy.” said Rebekkah Halliwell, Executive Director of Epilepsy Foundation Los Angeles. “Based on an outdated law from 1957, California requires doctors to report all patients with epilepsy to the DMV, but research has shown that mandatory reporting requirements may lead people with epilepsy to withhold crucial information from their doctors, risking an increase in seizures, which can lead to injury and even death. People living with epilepsy should be able to seek care from their doctors without fear of losing their driver’s licenses. We are hopeful that this important measure, which will still allow doctors to identify any patient they believe might not be able to drive safely, will continue to move through the legislative process.”

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State Senate Committee Approves Local Senator’s Bill Designed to Protect Drivers with Epilepsy

Posted on 2023-04-172023-06-12 by Lily

The Senate Transportation Committee on Wednesday approved Senate Bill 357, which would give doctors the discretion to report conditions they believe will impair a patient’s ability to drive. The bill, introduced by Sen. Anthony J. Portantino, D-Burbank, further eliminates language that portrays certain conditions, including epilepsy.

Portantino said the bill is necessary to protect the doctor-patient relationship and to ensure that drivers with epilepsy are not discriminated against.

“It’s time to remove the discriminatory practice of mandatory reporting in California,” said Senator Portantino. “SB 357 protects drivers with epilepsy by improving the patient-physician relationship and allows individuals affected by epilepsy to seek the care they need without fear of losing their driving licenses.”

According to the Epilepsy Foundation Los Angeles, California’s state law from 1957 discriminates against drivers with epilepsy and other conditions by requiring physicians to automatically report these drivers to the Department of Motor Vehicles. Research has shown that these requirements often result in patients withholding crucial information from their physicians and not seeking the care they need.

Epilepsy is the fourth-most common neurological disorder in America, affecting more than 3.4 million individuals nationwide and more than 425,000 Californians. When individuals with epilepsy withhold crucial information from their physicians, they put their access to appropriate care at risk, potentially increasing seizure activity or losing seizure control.

SB 357 would give doctors the option to report conditions they believe will impair a patient’s ability to drive, without discriminating against specific conditions, including epilepsy, Portantino said in a statement.

The bill would allow but not require doctors to make such reports and will provide immunity for physicians for either reporting or not reporting patients. The bill would also require the California Department of Motor Vehicles to publish a report by 2027 on the differences in patterns of reporting and crash rates under a voluntary reporting system, and add a sunset on the voluntary reporting system for 2029.

Rebekkah Halliwell, Executive Director of Epilepsy Foundation Los Angeles, expressed appreciation for Senator Portantino for authoring this critical legislation that will protect the doctor-patient relationship, improve access to care for people with epilepsy, and help end what was called decades of discrimination against the more than 425,000 Californians living with epilepsy.

Senator Portantino’s Senate Bill 301, which aims to create a financial rebate program to convert gas and diesel-powered motor vehicles into zero-emissions-vehicles (ZEVs), also passed the Senate Transportation Committee.

Source: Pasadena Now, Published on Thursday, April 13, 2023 | 5:50 am

Epilepsy Walk Los Angeles Returns to the Rose Bowl with Celebrities Josh Duhamel, Greg Grunberg and Renowned DJ Hapa

Posted on 2023-03-242023-03-26 by Rebekkah Halliwell

LOS ANGELES, March 24, 2023 — The Epilepsy Foundation Los Angeles is hosting its Epilepsy Walk Los Angeles at the Rose Bowl in Pasadena on Sunday, March 26 from 8 am to 12 p.m. The Epilepsy Walk is a fun-filled community event, with a serious cause, that gives everyone an opportunity to share their story, learn more about epilepsy, and connect with others affected by seizures. All, while raising funds for the 160,000 people living with epilepsy in the Greater Los Angeles region. The master of ceremonies for this year’s Walk is Josh Duhamel (“Transformers,” “Shotgun Wedding”), who is joined by Greg Grunberg (“Heroes,” “Star Wars,”), renowned DJ Hapa, who is considered one of the best disc jockeys in the music industry and Senator Anthony Portantino from California State Senate District 25.

“Everyone is needed in this fight,” said Rebekkah Halliwell, executive director, Epilepsy Foundation Los Angeles. “By walking and sharing, you inspire others to do the same. As our numbers grow, even more people will take notice so we can raise even more funding for epilepsy care and research. Individuals, their families, and friends can walk in person, or walk your way at home, whenever and wherever they’d like.”

Epilepsy can affect anyone. Over a lifetime, one in 10 people will have a seizure, and one in 26 will be diagnosed with epilepsy. Despite its prevalence, epilepsy receives 10 times less funding than other brain disorders.

In addition, the Epilepsy Foundation Los Angeles is rallying the community to put their heels, walking shoes and flip flops on display in a social media campaign timed to the Epilepsy Walk. People can take part by posting a photo of their favorite shoes and the story behind them – their epilepsy story – on their social media channels with the hashtag #Sharemyshoes and tagging @epilepsylosangeles.

For more information, or to register for the Walk visit epilepsylosangeles.org.