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 firstname.lastname@example.org.
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.
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.