THRIVING WITH EPILEPSY
The Epilepsy Foundation of Minnesota periodically features a "Thriving with Epilepsy" story about everyday heroes living with epilepsy in our community. If you or someone you know should be featured on this blog, please let us know!
Paul Delaney considers himself lucky, despite being diagnosed with epilepsy at five years old. 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. Read Paul's story here.
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. Read Taylor's story here.
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. Read her story here.
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. Read the Benitez-Gonzalez family's story here.
Ruth Schmitz is a team captain for the annual Rise Above Seizures Walk. Her history with EFMN has led to an appreciation of programs that serve youth and adults with epilepsy. Despite a busy schedule as a student, Ruth is an active volunteer with EFMN. She has witnessed the expansion of EFMN programs and is making an impact on those programs by leading a Walk team in St. Cloud later this summer. Read Ruth's story here.
Though Chong was diagnosed with epilepsy at an early age, he didn’t let his seizures get in the way of his education. He earned his Mass Communication:Television Production degree from St. Cloud State University, and even had the opportunity to study abroad in the U.K. As a recent graduate, he turned to EFMN’s new Employment Program for support and advice as he begins hunting for a job that he can make into a meaningful career. Read Chong’s story here.
From being diagnosed with a rare neurological disorder at the age of seven to becoming this year’s Winning Kid, Abby Ackerman is an example of what it means to be a Shining Star. Abby has been a member of the Shining Stars program for five years and has transformed into a role model who will travel to Washington D.C. this April to advocate for the epilepsy community through Teens Speak Up! Read Abby's Story here.
Camp Oz is not just a place for kids to enjoy traditional camp activities; it allows youth with epilepsy to meet others like them and gain a sense of independence in a physically and emotionally safe environment. Ben Stowell, a long-time camper, enjoyed these benefits and has carried both friendships and memories from camp into his adult life. It helped him become more comfortable with his epilepsy, and as he puts it, "Camp Oz taught me the only job I have is to be myself, and that's the best thing there is." Read Ben's story here.
Sylvia Nelson frequently shares her story and invites others to do the same. After experiencing a storm of seizures in 2007, she began connecting with her legislators through EFMN’s annual Day at the Capitol. This gave her the opportunity to tell her story and educate lawmakers about living life with epilepsy. Read Sylvia's story here.
Confronting her seizures was a long and tough process for Sarah DuCloux-Potter. She rationalized them as nightmares and naps, and went through some difficult times to get to the active and joyful life she currently lives. Accepting a new reality has allowed her to take control of both her life, and her epilepsy. Read Sarah's story here.
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. Read Kevin's story here.
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. Read Marianne's story here.
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. Read Jacob's story here.
Dr. Julia Valente was diagnosed with epilepsy at age 19 after more than five years of unknowingly experiencing seizures. Despite her challenges with epilepsy and its subsequent treatment, Julia persevered with her studies and graduated from medical school. She’s now a member of EFMN’s Board of Directors and is married with two young daughters. Julia’s husband, Gab Szerda, will be competing in the “Tor des Géants” race on September 10th, a 205-mile non-stop race in the Alps of Italy. Gab is using the race to raise funds in support of his wife. You can become part of Team Rise Above Epilepsy by donating to Team Rise; read Julia's story here.
Meet your Regional Coordinator:
The Epilepsy Foundation of Minnesota has been serving the 60,000 people living with seizures in our community for over 60 years. Educating, connecting and empowering people affected by seizures, EFMN’s programs and services reach areas outside of the Twin Cities Metro area including the communities of Duluth, Fargo, Rochester, and St. Cloud. Read the full story here.
Misty and JP Rennquist’s daughter, Julia, was diagnosed with epilepsy three years ago. Although fully aware of her seizures, Julia is a rambunctious, funny and very sweet five-year-old. The Rennquist family found support through EFMN early on and celebrates Julia’s epilepsy journey every year at the Rise Above Seizures Walk. Read Julia's story here.
Seizures can strike at any moment. Imagine living your everyday life seizure-free, and then one day you are faced with a life-altering diagnosis. Meet the Mattson family. After receiving news that their daughter Jacqui was diagnosed with epilepsy at age 14, they learned to cope with her seizures and find support through EFMN. Read Jacqui's story here.
This month, we would like to introduce you to Steve Stoterau. Steve has given generously to EFMN to ensure that kids with epilepsy experience the fun and friendships of a week at Camp Oz. Although Camp Oz was not available when Steve was diagnosed with epilepsy as a child, he now visits every year to experience the contagious joy of the campers. Read Steve's story here.
This month, we would like to introduce you to one of our families from North Dakota. Meet Griffin Walker, a 14-year-old teenager living with epilepsy. He is a two-year veteran of EFMN’s Camp Oz program, a Shining Star member and strives to be his best while rising above seizures every day. Hear from his mother, Roxann, as she shares her son’s journey and the positive impact EFMN has made on Griffin’s life. Read Griffin's story here.
Meet Taylor Johnson: a recent Hamline University graduate, a former participant in EFMN's Shining Star program, a dedicated epilepsy advocate, and one of Epilepsy Foundation of Minnesota's newest board members. Read Taylor's story here.