Author: Lee

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

Marianne Richmond is a picture book author who partnered with EFMN and Barnes & Noble to use her most recent book to raise money for epilepsy. She went through her own struggle with undiagnosed epilepsy at a young age, and has now written a book titled Be Brave Little One to help children to be brave no matter their situation.

Kevin Reed is an active EFMN volunteer who will be participating in his eighth EFMN Creative Arts Showcase this November. He was diagnosed with epilepsy after suffering three tonic-clonic seizures during college and has since used his passion for photography to show others that living with epilepsy doesn’t have to be a barrier to reaching your goals and dreams.

Jacob Milz experienced his first seizure at just 17 months old. Now seven, he has already grown into a powerful advocate for the epilepsy community. As an active member of the Shining Star program, Jacob has turned his elementary school into a Seizure Smart School, and with his service dog Bailey at his side he never hesitates to educate anyone and everyone about his seizures. Jacob has now been seizure free for three years and is looking forward to a successful year in the 1st grade and going back to Day Camp next summer.

Taylor Roder still remembers every detail from the day her daughter Peyton had her first seizure. Before that day she had never seen or heard of focal seizures, but since then she’s formed her own local support group, been part of numerous EFMN events, and raised awareness whenever possible.

“I have received an immense amount of love and support since becoming so public about Peyton’s epilepsy. I want Peyton to be proud and confident in her epilepsy because it’s part of her. As she continues to grow, she will come to learn that not everybody is like her. I never want Peyton to question that it’s okay to be different,” says Taylor.

Kelly Crawford’s diagnosis of epilepsy at 12 years old led to an adolescence compounded by mental health challenges. Now, with a master’s degree in social work and her principal’s license, Kelly is working with students like her and has the goal of becoming an administrator at an alternative high school. “Many administrators are worried about academics first and do not realize that students are only successful academically if they have their personal lives in order. I want to help make schools a place where students can both learn and be provided with opportunities for personal growth,” says Kelly.

The Benitez-Gonzalez family had no connection to epilepsy until the day it put 16-year-old Miguel in the hospital, and ultimately took his life. Now, just ten months later, his mother Clarissa uses her energy to raise awareness of the rare form of epilepsy that caused her to lose a child. She is Miguel’s voice now, and along with the other members of Team Miguel will be walking in his memory at the upcoming Rise Above Seizures Walk.

Our last full day of Camp Oz has arrived. It was a bit gloomy and chilly this morning, but I’ll take that weather over Sunday’s humidity any day – and it certainly didn’t stop the campers from getting to their first activities, even the swimmers. The water level has risen about 2-3 feet from the damn break a few days ago, so we moved over to Troy Beach right next door and the cabin groups still got to swim. Our last cabin groups of the day got to participate in the horses, so we sent a group of volunteers to assist with that activity.

Alas, this day finally brought some sunshine for the campers! Waffles were for breakfast today – always a hit with this group. We had a birthday in the house, so we all celebrated that as well.

Tuesday started off with some light rain again, but that did not deter the campers from getting off to a great start to the day! After breakfast, cabins were off to their first activity of the day. Today was the first day the camp store was open for campers, so it was neat to see what caught their eye. Camp staff set up several indoor options for cabins that didn’t want to be in the rain, so various groups voted on this morning activities.