The Epilepsy Foundation of Minnesota Blog

Team Leah is returning for their sixth Rise Above Seizures Walk and may just have their largest walk team yet. They all come together to support Leah, an 8-year-old with epilepsy who wants to be a chef, but in the meantime plays basketball, rides her bike with friends, and of course does some cooking and baking.

Change can come at any point in life, and for Bob Greer, there have been many moments of unexpected change. Shortly after getting married Bob was drafted into the Army, and more recently he was diagnosed with epilepsy at the age of 73. With no known cause for his recent seizures and diagnosis, Bob used EFMN’s Information Services and Connect Groups to learn about treatments and how others manage their epilepsy.

People with epilepsy partner with their health care team in order to bring about better seizure control. In the first article Dr. Rogin emphasized the importance of taking medication as prescribed. Additional means of self-management are discussed in this article.

Thomas and Anna Putnam share a bond unlike any other brother and sister. They may just be the only non-twin siblings to have an SCN8A epilepsy diagnosis in the world. This rare form of epilepsy is due to a sodium channel disorder and affects the 14-year-old Thomas and 11-year-old Anna in similar ways.

Mara LeRoy is always looking for her next activity. She recently learned about indoor skydiving, which naturally she had to try, and just finished up her eighth year of adapted downhill skiing. She’s eager now for the snow to back off and plans to attend the Epilepsy Foundation of Minnesota’s (EFMN) Family Camp for the third consecutive year this July. Mara has had epilepsy her whole life, but because she uses a wheelchair to get around she hasn’t been able to attend Camp OZ. She has found Family Camp to be a fun day camp that offers some great activities.

Managing your Epilepsy (Part 2) – Communicating with your Team
By: Professional Advisory Board Member, Tess Sierzant, APRN, CNS

The message Shar McPherson shares with others is that if you want to create change, you need to speak up. Whether it’s to raise awareness, receive help, or push for legislative policies that improve the lives of people with epilepsy, Shar is a vocal advocate and invites others to join her.

Being diagnosed with a rare form of epilepsy comes with its own unique challenges, but that doesn’t mean you have to go through it alone. Since their daughter Ellis was diagnosed with Doose Syndrome, Erik and Kendra Weiss have used monthly EFMN Connect Groups to meet others who have a child with epilepsy and learn from their experiences.

Managing your Epilepsy (Part 1): Managing your Medications by: Professional Advisory Board Member, Joanne Rogin MD, FAAN

Paul considers himself lucky, despite having been diagnosed with epilepsy at five years old. In addition to using EFMN’s programs and services, he came looking for ways to help those who weren’t as fortunate as him.