Seizure Safe Schools Act Signed by Governor Newsom

FOR IMMEDIATE RELEASE:                                                      Contact: Rebekkah Halliwell

October 4, 2022                                                                                                  (310) 670-2870

Seizure Safe Schools Act Signed by Governor Newsom

Bill Championed by Epilepsy Foundation Los Angeles Provides Schools with Education and Training for Recognizing and Responding to Seizures

California Becomes 19th State to Enact Version of Seizure Safe Schools Legislation

LOS ANGELES – The Seizure Safe Schools Act (AB 1810), a bill allowing public and charter schools in California to designate volunteers to receive training and education on caring for students with epilepsy, was signed into law by Governor Gavin Newsom on September 30, 2022. The Seizure Safe Schools Act, sponsored by the Epilepsy Foundation Los Angeles and authored by Assemblymember Marc Levine, had previously passed the State Senate in August with a unanimous vote of 38 to 0 after being approved by the State Assembly in May by a unanimous vote of 76 to 0.

“The adoption of the Seizure Safe Schools Act is a major victory for the nearly 60,000 kids in California with epilepsy,” said Rebekkah Halliwell, Executive Director of the Epilepsy Foundation Los Angeles. “Thanks to the leadership of Assemblymember Marc Levine and the steadfast support of a diverse coalition which included families affected by epilepsy, disability advocates, pediatricians and school nurses, schools in California will be well-equipped with the tools necessary to provide a safe and enriching environment for students with epilepsy.”

Among its major provisions, AB 1810 will allow schools to designate volunteers to receive initial and annual refresher training on recognizing and responding to seizures, including the administration of a student’s prescribed emergency anti-seizure medication.

“Children with seizures can be as safe at school as they are at home,” said Assemblymember Marc Levine. “Families are not powerless – we are empowered with tools to help our children live full, enriched and dynamic lives. AB 1810 makes sure that the same tools used to keep children with seizures safe at home are available to children at a school campus. I authored this important legislation for my child and for children throughout California who deserve to thrive in a safe and supportive learning environment.”

While school nurses are currently trained to recognize and respond to seizures, one may not be onsite or available when a seizure occurs. In 2013, the California Supreme Court unanimously ruled that California law already expressly permits trained, unlicensed school personnel to administer prescription medication and AB 1810 will guarantee that any employee who volunteers to care for a student with epilepsy will receive appropriate training and education.

“School nurses are the primary health professionals in a K-12 setting and the California School Nurses Organization was proud to support AB 1810. This law will provide school nurses with the tools they need to prepare and train other school staff to be able to respond appropriately when a child has a seizure,” said Sheri Coburn, Ed.D., M.S., R.N., of the California School Nurses Organization.

AB 1810 also safeguards physician-directed care and parental involvement by supporting development of Seizure Action Plans for students with epilepsy and identifying students who may be eligible for Individual Education Plans (IEPs) and Section 504 accommodations.

“Seizure Action Plans save lives. By establishing a strong line of communication between the families of students with epilepsy, their doctors, and their schools, Seizure Action Plans are a crucial tool for keeping students with epilepsy safe at school,” said Tracy Dixon-Salazar, PhD of the Seizure Action Plan Coalition, which was formed to educate people with epilepsy, their caregivers and healthcare professionals about seizure emergency rescue protocols and the importance of personalized seizure action plans.

AB 1810, which is based on the Epilepsy Foundation’s Seizure Safe Schools nationwide initiative, was supported by the bill’s sponsor, Epilepsy Foundation Los Angeles; the national Epilepsy Foundation; Epilepsy Foundation of Northern California; Epilepsy Foundation of Orange County; Epilepsy Foundation of San Diego County; as well as more than 90 other organizations, including American Academy of Pediatrics – California; American Nurses Association – California; Association of Regional Center Agencies; California Board of Registered Nursing; California Chronic Care Coalition; California Life Sciences; California Neurology Society; California School Nurses Organization; the Hidden Truths Project; Momentum; National Association of Pediatric Nurse Practitioners; Rare Epilepsy Network, and the Seizure Action Plan Coalition.

“As the primary author and sponsor of the American with Disabilities Act and a lifelong advocate for the rights of people with disabilities, I’m thrilled that California has become the 19th state to implement the Seizure Safe Schools Act,” said former Congressman Tony Coelho. Coelho represented California in the House of Representatives for more than 10 years, eventually serving as majority whip, and former chairman of the board of the national Epilepsy Foundation.

Epilepsy is the fourth-most common neurological disorder in the United States. More than 3.4 million Americans are currently living with epilepsy, including approximately 336,000 kids who have at least one seizure annually.

About the Epilepsy Foundation Los Angeles

The Epilepsy Foundation Los Angeles is leading the fight to END EPILEPSY® together and overcome challenges created by seizures by focusing on care, advocacy, research and education. Through these areas of focus, we offer a range of services and programs to help, support, advocate for, and empower those who are affected by epilepsy and their caregivers.

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Five Ways to Honor National Hispanic Heritage Month

Source: Epilepsy Foundation of America

The Epilepsy Foundation recognizes National Hispanic Heritage Month (Sept. 15-Oct. 15) by celebrating Hispanics and continuing to raise awareness about the epilepsies among this community.

Since 2003, Hispanics have become the largest minority group in the United States. According to the 2020 Census, Hispanics represent almost 19% of the total U.S. population. Hispanics are made up of diverse cultures and values. They are also one of many other ethnic and racial groups disproportionately impacted by health disparities. Factors such as language barriers, high uninsured rates, or cultural values can all negatively impact access to care for Hispanics. And, for those with epilepsy, not having access to specialty care can impact their ability to effectively manage their epilepsy and gain seizure control.

There are approximately 710,000 Hispanics in the U.S. living with epilepsy. Studies show that among untreated Hispanics with epilepsy, there is a 40% recurrent risk within two years after a first seizure. Although, epilepsy can affect everyone, Hispanics, and other communities of color, have less access to reliable information, specialized epilepsy treatment, and care. The good news is that epilepsy and seizures can effectively be managed with the right treatment and resources.

In recognition of National Hispanic Heritage Month, the Epilepsy Foundation offers the following tips to help Hispanics strive for seizure control and improved quality of life.

Talk to Your Family

If you were diagnosed with epilepsy, talk with your family about your diagnosis. Epilepsy is not a subject that is widely discussed among Hispanic families. In some communities, epilepsy is seen as a mental illness, deriving from the devil, or the belief that it is caused by one’s behavior or sins. While it may be difficult to share with your family for fear that they won’t understand, having the right information on hand can help you be more open about it.

Inform Yourself

The Epilepsy Foundation offers culturally relevant educational materials and resources in Spanish. These tools can provide you with vital information so that you can learn more about epilepsy, make informed decisions, and educate yourself and others.

Find an Epilepsy Specialist Who Speaks Spanish

It is important to understand what your diagnosis means and how best to treat it. If you don’t have access to a Spanish-speaking epileptologist, then find an interpreter who is knowledgeable about epilepsy so that you clearly understand the information provided by the doctor. You will want to know what treatment options are available for your type of seizures, and the steps you and your family need to take to effectively achieve seizure control.

Take a Seizure First Aid Training

In collaboration with the Centers for Disease Control & Prevention, the Epilepsy Foundation offers free seizure first aid trainings to learn how to recognize a seizure and administer seizure first aid. Trainings are offered in Spanish, live, in person or On-Demand.

Call the 24/7 Helpline

The Epilepsy & Seizures 24/7 Helpline (866.748.8008) has trained Spanish-speaking specialists to answer your questions and connect you to epilepsy specialists, and other resources in your community.

Epilepsy doesn’t have to be a death sentence. Many people with epilepsy live productive lives. The key is taking the first step to learn more.

 

Authored by Jackie Aker

Reviewed Date Thursday, September 15, 2022

Update on COVID-19 and People with Epilepsy

In a recent issue of the International League Against Epilepsy’s Epigraph, the subject of COVID-19 and people with epilepsy arose following a report shared at the European Epilepsy Congress in Geneva this past July.

At the Congress meeting, Dr. Bernhard J. Steinhoff reported upon two years of data collection to address questions surround the risks of the COVID-19 infection and vaccination, such as:

Q: Does COVID-19 infection increase new-onset seizures or epilepsy incidence in the population?
A: There is no evidence that it does.

Q: Was the COVID-19 pandemic associated with increases in seizure frequency?
A: Yes – but they were not due to infections or vaccinations.

Q: Are people with epilepsy at increased risk for more serious cases of COVID-19 infection?
A: If they are, it is due to comorbidities or other factors – not the epilepsy itself.

Read more online here.

 

 

September 12, 2022

Urge Governor Newsom to Sign Seizure Safe School Act into Law

AB 1810 (Seizure Safe Schools Act) has passed the Senate Floor and is now in front of Governor Newsom. We invite our community to send a letter voicing your support for Governor Newsom to sign the bill into law. Take these two easy steps today to make your voice heard:

Step 1: Write your own letter or customize our template letter (AB 1810 – Support Letter TEMPLATE – Governor Newsom).

Step 2: Email a PDF of your letter, with the subject line Requesting Signature on AB 1810 (Levine), to the Legislative Unit Inbox: leg.unit@gov.ca.gov

Questions? Contact Rebekkah Halliwell, Executive Director, Epilepsy Foundation Los Angeles at rhalliwell@epilepsylosangeles.org.

AB 1810 Background Information
The Issue: In the United States, an estimated 3,400,000 people – of which 470,000 are children – have been diagnosed with epilepsy, a neurological disorder involving recurrent unprovoked seizures. It is the fourth most common neurological disorder, and 1 in 26 people will develop epilepsy in their lifetime. Aside from those who have the disorder, many lives are affected by epilepsy. Seizures are unpredictable and can occur at any time—including during school hours. While school nurses are trained to administer medication, school nurses may not be onsite or available when one occurs. In 2013, the California Supreme Court ruled that non-medical school employees could administer anti-seizure medication to students suffering from seizures. It is important that those who are supervising a child with epilepsy have the opportunity to be trained properly to recognize and, if necessary, to respond to a seizure and help the child.

The Solution: AB 1810 would establish the Seizure Safe Schools Act to allow schools to designate one or more volunteers to receive initial and annual refresher training for the emergency use of anti-seizure medication for a pupil diagnosed with seizures, a seizure disorder, or epilepsy, if the pupil is suffering from a seizure. California has enacted similar laws for the use of epinephrine for allergic reactions (SB 1266, Huff 2014) and naloxone for opioid overdoses (AB 1748, Mayes 2016). The volunteer training would include recognition of the signs and symptoms of seizures and the appropriate steps to be taken to respond to those symptoms. In addition, the bill would provide for the development of “seizure action plans” for all students diagnosed with epilepsy or seizures and identify students eligible for individualized education plans (IEPs) and Section 504 accommodations. AB 1810 would also guarantee protections for the employees who volunteer to administer the medication. Eighteen states have already implemented versions of the Seizure Safe Schools Act. This bill will provide school sites with information and training necessary to aid children with Epilepsy while on campus and create a safer environment for these children to succeed.

View AB 1810 language
View Recent Press Release

Seizure Safe Schools Act Passes Two Assembly Committees

We’re happy to announce that the Seizure Safe School Act has been voted out of the Assembly Education and Judiciary committees. This important bill, that will continue through the legislative process, helps to improve the care of students with epilepsy and seizures in California.

Thank you to our dynamic coalition of legislative coauthors including Assemblymembers Marc Levine, Phillip Chen, Steven Choi, Heath Flora, Cristina Garcia, Tom Lackey, Devon Mathis, Adrin Nazarian, Luz Rivas, Kelly Seyarto, and Senators Scott Wiener and Rosilicie Ochoa Bogh.

To learn more about this legislation, please view below:

To get involved, please contact Rebekkah Halliwell at rhalliwell@epilepsylosangeles.org.

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The First Complete, Gapless Sequence of a Human Genome

On March 31, 2022, the NIH announced in a press release that “scientists have published the first complete, gapless sequence of a human genome, two decades after the Human Genome Project produced the first draft human genome sequence. According to researchers, having a complete, gap-free sequence of the roughly 3 billion bases (or “letters”) in our DNA is critical for understanding the full spectrum of human genomic variation and for understanding the genetic contributions to certain diseases.” Click to read the complete press release.

Why does this matter to people with epilepsy? Because research is identifying more and more that the causes of the epilepsies are genetic.

What should people with epilepsy do? Discuss with your doctor the need for a genetic test and your options.

What to know about genetic tests? There are many types of genetic tests. Some tests focus on individual genes, groups of genes, or chromosomes.

The most common types of genetic testing are:

  • Epilepsy Gene Panel: This test involves the analysis of the most common genes associated with epilepsy. There are many types of epilepsy gene panels. Some have fewer than 20 genes and others have many hundreds of genes.
  • Chromosome Microarray. This genetic test involves analysis of a person’s chromosomes (structures that contain DNA). Checks to make sure there are no imbalances that could cause epilepsy. Imbalances include extra or missing pieces of chromosomes – or – extra or missing entire chromosomes.
  • Whole Exome Sequencing: This complex genetic test involves analysis of the entire DNA code to look for changes in genes associated with epilepsy. It is similar to the epilepsy gene panel, but looks at a much larger number of genes, including rare and newly discovered genes.
  • Targeted Testing: If there is already a known genetic cause of epilepsy in a person, other family members may have targeted testing to help clarify their risk.
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A Successful Epilepsy Walk Los Angeles 2022

Thanks to everyone who supported and participated at the Epilepsy Walk Los Angeles on Sunday, March 6, 2022 at the Rose Bowl in Pasadena. It was incredible to reunite with nearly 1,000 people at the Rose Bowl after many years of bad weather and safety precautions because of COVID-19. Thus far, we have raised nearly $300,000!

To view photos from the event, visit us on Facebook.

Talks are already underway for next year’s event at the Rose Bowl in March 2023.

 

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