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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