Empowering Epilepsy Communities: Stories of Inspiration and Connection from Burnaby to Seattle
This past week we had the pleasure of meeting members of the epilepsy communities in Burnaby, British Columbia, Canada and the greater Seattle area in Washington State. It seems that no matter what state or country we visit, we meet individuals affected by epilepsy who continue to inspire us. A highlight for any event is …
EFNE Sailing Camp – 2023
Last week, on a sunny Thursday, Phil joined Epilepsy Foundation New England at their annual sailing camp in Newport, Rhode Island. This camp is held with Sail to Prevail, a nonprofit that improves the lives of more than 1,000 children and adults, each summer, through sailing in their fleet of specially adapted, 20-foot sailboats. Their …
Communication through unspoken symphony
Sheet Music We recently became aware of an alternative opportunity for self-expression. We decided to participate in this intriguing project. The idea behind unspoken symphony is to provide non-verbal ways of communicating. It all started when a father explained some of the challenges of having a non-verbal child, who suffers from two rare and severe …
Purple Day 2023
Giving the keynote address at the 4th Annual Purple Day for Epilepsy Awareness Around the World Expo Celebrated annually on March 26, Epilepsy Awareness Day, or Purple Day, was created to increase the public’s understanding of this brain disorder and to eliminate the fear and stigma surrounding it. Yesterday, I had the privilege to give …
Epilepsy Stigma: Ignorance, Prejudice, Discrimination
Phil during recovery from his head injury In my life with epilepsy it has been rare that I have experienced discrimination about my disease. I suffered my head accident which caused my epilepsy when I was 15. Back at school it was business as usual, except that with high doses of phenobarbital I often slept …
Welcome Aboard, Virtual Shipmates!
This spring, we invited people with epilepsy to join our crew as Virtual Shipmates by participating in our One More Step Challenge. We asked, “Are you able to do something to improve your quality of life? Can you take one extra step to do something you haven’t done before, with the necessary safety measures in place?” …
Richie Shane
Richie Shane started having seizures soon after he finished college. After over 3000 seizures and unsuccessfully trying to control them through medication, he underwent 2 surgeries and has been completely cured. His quality of life has been significantly improved and he embraces this opportunity to live his life to the fullest. https://youtu.be/MV144n3qCgQ Richie Shane Richie's …
Cassandra Lund, Healthcare Professional
You cannot control what happens to you in life, but you can control how you respond to it. I started having seizures when I was a freshman in college. These are complex partial seizures, which occur with no warning, last a few minutes and leave me confused and with no memory of what happened. Needless …
Finding a Reliable Mechanic and the Right Tool to Fix Your Brain
Why do people with epilepsy respond to different medications while others are unable to find a medication that controls their seizures? It’s a fascinating question and the answer lies in a combination of three variables: i) there are many different forms of epilepsyii) there are many different causes of epilepsy, and as a consequence iii) each medication is tailored …
Trudy Robinson, sailor
Sailing with Ali Like many others, I was not born with epilepsy. I had my first seizure when I was 17 during my senior year of high school. My three best girlfriends and I decided to go up to the Boston Museum of Science for the day. While we were there we went to a …
The One More Step Challenge: Are you able to take one extra step to do something you haven’t done before, with the necessary safety measures in place?
Celebrate our global community of Virtual Shipmates who joined the One More Step Challenges on a personal voyage towards living a fuller life.
The Sail For Epilepsy voyages, skippered by a person with epilepsy, offer an example of living a fuller life. View the latest updates, photos, and videos sent in from the boat.