Teen's Speak Up/Public Policy Institute Participants , May 2021
This year EFNE had 13 outstanding volunteers represent people living with epilepsy at the national Epilepsy Foundation’s Teens Speak Up! & Public Policy Institute (TSU-PPI)
TSU-PPI is the Foundation's signature advocacy initiative. This conference brings together epilepsy advocates from across the country to make a difference. These folks volunteered countless hours over two months to receive advocacy training and then participated in 9 virtual meetings with their federal legislators and staff in Washington, to share their experiences and discuss issues that are vital to the epilepsy community. Our thanks, appreciation and recognition go out to:
- Colleen Kelly
- Bridget Drummey
- Megan Richardson
- Tegan Swan
- Dorothy Crowell
- Mary Crowell, Dorothy’s Mom
- Bryanna Gosselin
- Dawn Gosselin – Bryanna’s Mom
- Lexi Moore
- Grace Dexter
- Michelle Dexter – Grace’s Mom
- Marissa Gould
- Maria Gould – Marissa’s Mom
In their own words, here’s what a few of our participants had to say about the experience:
My name is Colleen Kelley I live in Massachusetts. I’m 24 years old and I am a dog trainer. I’ve had epilepsy since I was 12 years old. For me the highlights of participating in the TSU/PPI meetings were getting to advocate for other people living with or affected by epilepsy. I learned how important it is to spread awareness and make sure as many people as possible are educated about epilepsy.
Hi there! I'm Tegan Swan and I am from Waltham Massachusetts. I'm 16 and am currently a Junior at Waltham Highschool. I have had epilepsy since I was 2 and have been diagnosed since I was 4 with absence epilepsy.
For me, the highlight of participating in the TSU meetings was being able to tell my story. I am very lucky to have well-controlled epilepsy which allows me to tell my story and tell the stories of those I know whose epilepsy is less controlled. I learned how important It is to not take life for granted. Anyone can develop epilepsy at any point and epilepsy can take what you know so quickly. Live your life to the fullest. No matter how clique that sounds it's true. You can change the world for the better.
Hi, My name is Bryanna I live in New Hampshire. I am 14 years old, and I am a freshman in high school. I have had epilepsy since I was 12 years old.
The highlight of participating in TSU/PPI meetings was how the workers were very understanding of where I come from and why we are asking for 13 million dollars to support the CDC Epilepsy Program. I learned how important it is to advocate for change and what I believe should be heard and taken into consideration.
I am Dawn, Bryanna's mom. I have had epilepsy since I was 15 years old. Bryanna and I have participated in the TSU/PPI meetings the last two years. It has been a great opportunity to meet people with epilepsy from all around the United States. While also getting a chance to work with our local representatives to be able to tell our stories.
I’m Megan Richardson and I live in Massachusetts. I’m 20 years old and will be going to school in the fall for floral design. I have had epilepsy since I was about a year and a half but started having seizures when I was about six months. For me, the biggest highlight of participating in the TSU meetings was sharing my story. I learned how important it is to be the best possible advocate for myself in regard to my health and everything else in my life.