Teens Speak Up

About Teens Speak Up

The Teens Speak Up! & Public Policy Institute (TSU-PPI) is the Epilepsy Foundation of America signature advocacy initiative. This biennial conference brings together more than 175 advocates, including local Epilepsy Foundation office staff, families, health care providers, and volunteers from across the country to make a difference. Teens living with epilepsy and a family member have the opportunity to visit the nation’s capital to receive advocacy training and meet with their lawmakers to share their experiences and discuss issues that are vital to the epilepsy community.

These passionate young advocates help to represent the 470,000 children living with the epilepsies when they go up on Capitol Hill. It is also an incredible opportunity for teens – and their families – to connect with each other. Each teen is asked to turn their training into action in their respective home districts through a Year of Service. Through this program, participants learn the latest about epilepsy, their rights and governmental happenings and we strengthen our nationwide advocacy network.

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Teens getting involved

Teen Speak Up 2023

Sophia Seeger – February 26th – 28th

Sophia Seeger will be representing CT at this year’s conference. She has helped our office develop best practices to reach teens with Epilepsy and spoke at our Gala this past year.

She began her work as an advocate by spreading awareness and fundraising every October with the Stamford Education 4 Autism where she raised money to give children’s books to every elementary school in Stamford for kids to learn about Epilepsy & Autism. Sophia is also the founder of Milo & Me, a multinational online teen support for girls with Epilepsy. Sophia enjoys figure skating, singing, and volunteering.

We are so excited to share what she has accomplished so far in her year of service!

In March, she participated in a few community events through her non-profit Milo&Me. She raised epilepsy awareness among many families. 

She also participated in EFCT’s “Epilepsy Advocacy Day,” where she spoke with many other epilepsy advocates about the importance of making Connecticut a seizure-safe state.

In April, she participated in Epipalooza, an epilepsy benefit concert in New Jersey. She sold custom epilepsy merchandise.

In May, her friends and her rallied up and went to EFCT’s Stamford Walk to End Epilepsy.

In June, she went around her local farmers market asking people questions about epilepsy. 

In July, she spread more epilepsy awareness at local markets.

In September, Milo&Me became an official non-profit is now awaiting 501(C)(3) status. She also started her own fundraiser for children in the EMU to get access to Nilly Noggin EEG Caps. Nilly Noggins are special caps made to minimize stress of getting an EEG and provide EEG technicians quicker access to fix any malfunctioning leads. So far Sophia has raised almost $2,000 on Go Fund Me.

This October, she is teaching 8th graders how to paint purple pumpkins for their community service. For her Nilly Noggins fundraiser she is running a bake sale.

Thank you Sophia for everything you do to advocate and support the epilepsy community!

Click the button below learn more about Sophia and Milo and Me.

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Become an Advocate

The Epilepsy Foundation of Connecticut leads the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures and save lives.

We need your help! Join our growing force of Advocates and help us in our mission to create positive change in Connecticut and on Capitol Hill. Contact us to see how you can become an Advocate today.

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