For this issue, Brigid Baffico is recognized as our Epilepsy Star for her tremendous dedication to the epilepsy community and all the amazing work she has continues to be involved in!
June Epilepsy Star: For this issue, we are very pleased to have Brigid Baffico as our amazing Epilepsy Star!
Brigid was nominated by our March 2024 Epilepsy Star, Debbie Josephs, of the Anita Kaufman Foundation, and she had only the most wonderful things to say about Brigid!! We invite you to click on this link and read all about Brigid's journey with epilepsy and how she has dedicated herself to making life better for those living with epilepsy.
How did epilepsy come into your life?
I was officially diagnosed with Epilepsy when I was 17 years old. I had previously had a seizure when I was 15, but with inconclusive tests and no prior medical history or genetics -- I was told it was probably a "one-off". My confirming seizure happened when I was cheering on the field during halftime for my Senior year Homecoming football game. I was unconscious for a while and woke up to the news that I had this seizure and the likely Epilepsy diagnosis. At that point, I considered it was "sink or swim." Because of my very public seizure, I could either hide and not talk about it or I could use this as an opportunity to educate everyone else at the same time I was learning about my new life with Epilepsy. I chose the latter and Ihave never looked back.
What has your journey with epilepsy looked like, challenges, bright spots or people, etc.
Honestly, I have been very lucky to have an amazing team on my side -- from my family, neurology team, and the AWESOME people I have met along the way over these last 27 years since I was diagnosed and the organizations that I have joined forces with. BUT I was not that fortunate at the beginning of my journey. Back in 1997 when I was first diagnosed, there wasn't a Purple Day or worldwide initiatives to talk about Epilepsy -- actually, I had never even heard about Epilepsy. It was exhausting trying to find others who wanted to join together and not remain silent. I would say, the greatest bright spot for me in this journey was in 2010 when I connected with the Anita Kaufmann Foundation, and everything started to click into place. This happened to be at the same time my son was starting school, and I was anxious to make sure that educational programs were available for seizure first aid and Epilepsy awareness and my connections with AKFUS allowed me to get into classrooms and make those things happen.
How have you been working to help others with epilepsy? Tell us about any projects or initiatives you have been a part of and what those experiences were like for you and the people involved.
Education. Education. Education. I love musicals - "Beauty and the Beast" is one of my favorites. And in one of the lyrics they sing "we don't like what we don't understand, in fact it scares us." If something is unknown, it's scary, right? My job...my passion...is to make the unknown not scary. I'm a teacher by trade and I understand that talking about complicated things is tough - but things like Epilepsy, seizures, SUDEP, our own personal stories can all be broken down to any grade level by little chunks and made accessible so that the unknown becomes not scary. And then, I always tell the students that I have made them superheroes because knowledge is power, and they now have the power to help.
What are you working on presently and what plans do you have for the future?
Summer/Early Fall is scheduling times for presentations in schools and I am hoping to increase the number I am going to visit this year -- I am also hoping to increase the number of advocates around the United States who get into the classrooms in their own states and just talk about Epilepsy. I truly believe that starting with youth is where it's at. We can create a better and safer community for those living with Epilepsy by educating the amazing changemakers of tomorrow.
For the future, I am committed to encouraging more states to pass the "Seizure Smart Schools Act" so that protocols could be in place to make schools a safe and comfortable environment for all students living with Epilepsy. They are getting closer every year to making this a nationwide effort!
Anything else to add?
If anyone is interested in meeting with me directly and starting their own Epilepsy education/advocate journey...I will be at the Purple Day Every Day Convention in Disney World on March 8th ready to help you get started! https://purpledayeveryday.org/
