Share the Journey with Jeneva: Lauren Shillinger on Epilepsy Advocacy

Brynleigh Shillinger [image description: A young girl with dark hair and a purple hair bow poses in a wicker outdoor chair with teal cushions. She holds a purple sign that reads “Brynleigh’s Act, SB225, HB370, #Seizure Safe Schools MD.”]

Bio: After graduating from Elon University with a degree in Corporate Communications, Lauren 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!

Tell me about your family. 

We enjoy advocacy, fundraising, and spreading awareness for TSC and Epilepsy! Sharing our journey spreads awareness while helping other families connect and share resources. Our family loves vacations to the beach and trips to amusement parks like Hershey and Disney. 

Tell me about Brynleigh. 

Brynleigh is a happy girl who’s smile brightens up a room! She’s a courageous warrior who surprises us with her kindness towards others. She always thanks her medical team when they are checking her vitals or drawing her blood. She is in Kindergarten and absolutely loves music therapy. We have noticed she can memorize and learn more skills when they are paired with music. She doesn’t like eating veggies, but will finish a box of chicken nuggets before we finish our drive back home. She is obsessed with all things Disney … rides, music and movies. She enjoys swinging and her rocking chair. She is a wonderful big sister and loves to play with her little “sissy.”  Brynleigh got an adaptive bike this past year, so we take lots of bike rides and family walks when the weather is nice.

The Shillinger Family. [A father poses in white shirt and purple tie, a mom holds her daughter—both mother and daughter are wearing deep blue clothing.]

When Brynleigh was born, I became a stay-at-home mom. Brynleigh was diagnosed at nine-and-a-half months with Tuberous Sclerosis Complex (TSC) and Epilepsy, which is a rare genetic disorder that causes tumors to grow in all of your major organs. Brynleigh has tumors in her brain which cause Epilepsy, and she had brain surgery in 2016. TSC is the leading genetic cause of both Epilepsy and Autism. Brynleigh was diagnosed with TSC and Epilepsy in 2014, and, later, was diagnosed with Autism.

Explain Brynleigh’s Act and why this legislation is so critical for children with epilepsy. Have similar bills been passed in other states? How did you become involved with the Maryland legislation?

Yes, this is a nationwide initiative that's supported by the National Epilepsy Foundation. Seizure Safe Schools Legislation has already been passed in six states: Kentucky, Texas, Illinois, Indiana, New Jersey, and Virginia! Including Brynleigh’s Act, Seizure Action Plans (SB225/HB370) in Maryland, there are 17 states with bills in the legislative process.  

We had been advocating with both the TS Alliance and the Epilepsy Foundation since shortly after our daughter’s diagnosis. We always had concerns in the back of our minds about how her transition to school would be handled and how her team would be trained. After hearing about the first state, Kentucky, to pass this legislation, we contacted the Maryland community chapter of the Epilepsy Foundation and asked them if we could start the advocacy project in Maryland … we approached our Maryland legislators Senator Ronald Young and Delegate Ken Kerr of Frederick, asking them if they would agree to be the bill co-sponsors … they immediately agreed and “Brynleigh’s Act” began and was introduced in the Maryland General Assembly!

How can our members help with the effort in Maryland and in other states? 

In Maryland, you can contact your Maryland State Senators and Delegates to share your story and ask them to vote YES on SB225/HB370 “Brynleigh’s Act” to make our Maryland schools seizure safe now! In other states, connect through the Epilepsy Foundation chapter in your state to join their effort and advocacy team. Most states have already started the process and are actively looking for families to share their story and help them to contact their legislators.   

Can you share with us what you’ve learned about advocating at the state level? What are your tips for getting things done and getting involved?

Reach out as a constituent to your district’s representatives … they want to hear from you!  Check out their website to see their background and what initiatives they are working on to figure out their legislative goals. Connect with your Senators and Delegates/Representatives on social media. They often offer ways to connect with their constituents by providing open forum events like roundtable discussions and coffee chats.

Make sure to check with local organizations and advocacy groups on projects so you aren’t starting a project that's already in motion. We are stronger in groups and can make a bigger impact when we support advocacy initiatives that are already in progress, and it's easier than starting on your own. Many groups can connect you with other advocates and legislators working on similar projects while providing valuable resources and support.

How have you engaged Brynleigh in self-advocacy? 

Advocates for Brynleigh’s Act pose in a Maryland General Assembly office building. [image description: Fourteen people wearing shades of lilac, purple and deep blue pose with a Maryland state representative, who holds a sign explaining Brynleigh’s Act. They stand on a white and black marble floor.]

Brynleigh has been so brave and strong throughout her journey! We consider her our advocate-in-training. She’s met with Senators and Delegates. She's joined our family for days of advocacy and awareness, and even attended a bill hearing. When she's not feeling well or events conflict with school/therapy, our family made a photobook of her journey to show our legislators if she isn't able to attend in person. Our family is so incredibly proud of how far she has come and it's amazing to see how her story has helped make such a big impact!

How has advocacy given meaning to your life? 

It’s honestly been life changing in so many ways! It's given me a new passion and purpose in life. It's so rewarding to give back to our community and see our advocacy efforts creating real change. It's also a way for us to be Brynleigh’s voice until she can speak for herself. Brynleigh’s journey with TSC and Epilepsy has been difficult and filled with many challenges over the years. Her setbacks and struggles have also fueled our family to fight for a cure. As a family we advocate for more funding, fundraise for new research, encourage seizure first aid training/education, and spread awareness. We are lucky that we've had the support of the TS Alliance, where we were first introduced to Federal Advocacy projects that turned into state level opportunities. We've also had the support of the Epilepsy Foundation to educate and train Brynleigh’s school team each year since Brynleigh started preschool, which led us to start “Brynleigh’s Act” to make schools seizure safe in Maryland. Together we can make a difference and a huge impact for those living with epilepsy and TSC. We are proud of what our family and community of advocates has accomplished so far and can't wait to see Brynleigh’s Act passed into law!

If you could define advocacy in a single sentence, what would it be?

Sharing your story can turn adversity into advocacy, and creating change can make a big impact in your community!

[This interview has been edited for clarity and concision.]

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Jeneva & her son Rob [image description: A mom with short blonde hair wears a blue scarf & grey dress. Her son is seated in a wheelchair with an orange shirt & orange baseball cap.]

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a recurring feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College.