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!
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.