Support Seizure Safe Schools NOW! (by Lauren Shores Shillinger)
Brynleigh Shillinger, age 8. [image description: A young girl with light skin, dark hair and a purple hair bow poses in an outdoor chair with teal cushions. She holds a purple sign that reads “Brynleigh’s Act.”]
My daughter Brynleigh is a happy girl whose smile brightens up a room, She is in first grade and absolutely loves music therapy. She doesn’t like eating veggies, but will polish off a box of chicken nuggets before we finish our drive back home. Brynleigh was diagnosed at nine-and-a-half months with Epilepsy and Tuberous Sclerosis Complex (TSC), which is a rare genetic disorder that causes tumors to grow in major organs. TSC is the leading genetic cause of both Epilepsy and Autism.
Brynleigh and I are also advocates for the Seizure Safe Schools Initiative in Maryland, promoted by the Epilepsy Foundation for implementation in all 50 states. Our family has advocated with the TS Alliance and the Epilepsy Foundation since our daughter’s diagnosis. We’ve always had concerns about her transition to school. At school, who would be trained to respond to her seizures?
Approximately 1 in 10 people will have a seizure in their lifetime–a teacher, student, or even a school nurse could someday benefit from others nearby who know how to respond. This is what the Epilepsy Foundation’s Seizure Safe Schools Initiative is all about. In 2018, Kentucky became the first state to pass a Seizure Safe Schools bill. Since then, similar legislation has been passed in 12 states: AL, CO, IL, IN, KY, MN, NE, NJ, OK, TX, VA and WA. Another 10 to 15 states have bills in some stage of the legislative process.
Lauren and Sean Shillinger with Diana Briemann, an advocate and teacher who also has epilepsy. (Pre-COVID photo) [image description: A tall man with light skin and grey hair stands behind two women with light skin, one with blond hair and one with red hair. Each is dressed professionally and wears a purple item of clothing to symbolize epilepsy awareness.]
Maryland needs to join the ranks of states with Seizure Safe Schools. There are 59,900 people living with epilepsy in Maryland, of which 7,900 are children and teens. In 2019, my family approached our state legislators, Senator Ronald Young and Delegate Ken Kerr, on behalf of the Epilepsy Foundation, asking them to be co-sponsors of Brynleigh’s Act. After hearing our family’s story and learning about the prevalence of epilepsy in our state, they agreed and Brynleigh’s Act was first introduced in the Maryland General Assembly.
We are hopeful that this year, 2022, will be the year that Maryland finally passes our bill! Brynleigh’s Act would train school personnel on seizure detection and first aid response on a biennial basis; mandate Seizure Action Plans to be on file for every student diagnosed with epilepsy or a seizure disorder and require those plans be available to all personnel; ensure the administration of medications approved by the U.S. Food & Drug Administration; and include a Good Samaritan clause.
Here’s how you can help support Seizure Safe Schools! In Maryland, contact your Maryland State Senators and Delegates to share your story and ask them to vote YES on Brynleigh’s Act (HB136 & SB299) to make our Maryland schools seizure safe now!
In other states, connect with your Epilepsy Foundation chapter to support their effort. Most states have already started this process and are actively looking for families to share their story.
Sharing your story can turn adversity into advocacy, and help make a big impact in your community—it could even save a life!
A group of Epilepsy Foundation of Maryland members pose with local physicians and bill co-sponsor Delegate Ken Kerr in the Annapolis General Assembly. (Pre-COVID photo) [image description: A group of 14 adults, both men and women of a variety of skin tones, pose in an atrium in front of a hearing room. Many wear a purple item of clothing. Double doors are open behind them and a sign at the top of the doors reads “Education, Health and Environmental Affairs Committee.]
After graduating from Elon University with a degree in Corporate Communications, Lauren Shores Shillinger had a 12-year career in the electronic healthcare industry. Lauren and her family have volunteered, advocated, and fundraised for TSC and Epilepsy. In 2017, Lauren became Chair for the TS Alliance Community Chapter in Maryland and began serving on the TS Alliance committees for Government Relations and Community Outreach. She annually participates in the March on Capitol Hill, and has planned and implemented the first TSC Maryland Day of Advocacy and Awareness in Annapolis. Lauren is currently advocating for Brynleigh's Act, which would make Maryland schools seizure safe. She has also served as the Walk Chair for the National Step Forward to Cure TSC walk and various other fundraising events. Lauren is completely dedicated to making a difference in not only her daughter Brynleigh’s life, but all who are affected by TSC and Epilepsy!