Epilepsy looks different for everyone, and research must reflect that. More than 1.7 million women and girls in the U.S. live with epilepsy and face unique challenges in treatment and care. In honor of Women’s Health Month, sign up for empowER&D™ today. By sharing your lived experience, you can help close the research gap and ensure better outcomes for everyone. Sign up: LINK IN BIO.
I was diagnosed with epilepsy at 18 years old, during my freshman year of college, a time that was supposed to be full of excitement, new beginnings, and independence. Instead, I was faced with fear, uncertainty, and a reality I never saw coming. When I first got diagnosed, it felt like my world was on pause. I was having seizures in class and at church. It was hard not being able to drive myself and not having control over my life. Some days were harder than others, but I didn’t quit. I learned how to take things one day at a time, lean on support, and find strength within myself. Read more stories and share yours: /eJourney?utm_campaign=eJourney&utm_content=1778877005&utm_medium=social&utm_source=instagram
Every day, the approximately 3.4 million people in the U.S. living with epilepsy and seizures look for answers, support, and hope. Because of supporters like you, the Epilepsy Foundation is there, educating communities about seizure first aid, advocating for families, and advancing research. This spring, as you take time to get organized, we invite you to consider one meaningful way to help save lives: including the Epilepsy Foundation in your estate plans. Through our portal at FreeWill, you can create or update your will for free in about 20 minutes. It is a simple way to protect the people you love while considering a planned gift that helps ensure no one faces epilepsy alone. Get started today: LINK IN BIO.
A heartfelt thank you to our partner, CURE Epilepsy, for supporting our first Research Community Engagement Fellow cohort. Under the leadership of Dr. Laura Lubbers and Dr. Mary Holmay, six outstanding scientists joined our Research Ambassador Bootcamp, sharing their work with our ambassador community while building skills in effective science communication and meaningful community engagement. We’re excited to continue growing this partnership and strengthening connections between the research and epilepsy communities.
Our next epilepsy bereavement support group will meet on May 20. If you’ve lost a loved one to epilepsy, you’re not alone. These groups offer a safe, supportive space for those navigating grief. Whether you choose to share or listen, you’ll be surrounded by people who understand. 💜 To learn more or register, please email [email protected].
I was diagnosed with epilepsy back in middle school, and at the time, it felt like my life had completely changed. I had dozens of seizures, and it made everyday things difficult and stressful. For a while, it felt like nothing was really working, and it was hard to stay positive. Everything started to shift when I switched neurologists. That decision ended up changing my life. They took a different look, really listened, and worked toward a solution to keep me seizure-free, which finally gave me hope. In high school, I had surgery, and that moment was a turning point for me. Today, I put my energy into photography. It’s more than just a hobby for me. It’s a way to express myself, capture moments, and stay locked in on something I love. My journey hasn’t been easy, but it’s shaped who I am, and I’m just getting started. Read more stories and share yours: LINK IN BIO.
My name is Ashleigh. My daughter’s name is Everleigh Kate. She is turning 4 today (May 11). She was diagnosed with epilepsy two weeks ago. Everleigh Kate has Panayiotopoulos Syndrome and primarily has seizures during sleep. We are teaching Everleigh Kate about seizures and how to advocate for herself. So far, she says, “Hi, I’m Everleigh Kate. I have epilepsy. That means I have seizures. My brain sparkles.”
We have been so thankful for the supportive people in our lives and the resources available to us.
Over six years ago, the Epilepsy Foundation recognized the extraordinary work of school nurses caring for students with seizures and epilepsy. As part of my educational journey and commitment to educating others, I joined a team to help develop a certification training program for school nurses. Together, we contributed clinical expertise, nursing practice standards, and a focus on inclusive care for students living with seizures and epilepsy.
It has been my pleasure to continue serving as a clinical consultant, helping update and strengthen the training content. My motto in practice is, “Each one, teach one.”
The goals of this project are to spread awareness, share evidence-based information, and promote certification for school nurses who care for students with seizures and epilepsy.
What happens when epilepsy powerhouses hang out for a weekend? Real change. Tune in for convos about everything, like taking leave from work to do a med change, eclampsia-triggered seizures (“The Pitt” fans, you’ll know this one), loopholes when insurance won’t cover meds, and moms being told there are “no other options” for their kids.
Researchers living with epilepsy share what it’s like to study SUDEP and new treatments, plus the real deal on what clinical trials actually mean for people trying new epilepsy medications.
Thank you to the Epilepsy Foundation of America for letting the podcast crash the Research Ambassador Program!
Help keep “What the Ef” going! Subscribe and rate on whichever platform you listen to!
Shout out to the folks who help keep things changing the epilepsy community! Thank you sponsors Neurelis & SK life science AND community partners @epilepsyfdn@epilepsyalliance and @danny_did_foundation_ !
#epilepsy #whattheefpodcast #thepitt #seizures #epilepsyawareness💜
Every step you take helps raise awareness, drive research, and provide support for the 3.4 million people in the U.S. living with epilepsy. Join a local walk this month and become a part of the movement for change. 💜 Find a walk near you: LINK IN BIO.
Our Law Enforcement-Informed Training for Recognizing and Responding to Seizures, supported by Eisai, helps public safety professionals better understand epilepsy and seizures. Recently, Master Trainer Val Budischak trained public safety officers at the Mall of America in Minnesota on April 15. We also thank the Southeast Louisiana Area Health Education Center for promoting the training at the International Association of Chiefs of Police Officer Safety and Wellness Conference. Every outreach effort helps create safer encounters between law enforcement and people with epilepsy. Learn more: LINK IN BIO.
#NationalPoliceWeek
Veterans and military members may face an increased risk of developing epilepsy due to traumatic brain injuries sustained during service. For Veterans living with post-traumatic epilepsy, the Military Family & Veteran Chronic Disease Self-Management Program, beginning June 2, offers tools and support to help manage their condition and improve quality of life. Learn more: LINK IN BIO.
