New campaign aims to calm the storm children with epilepsy face

November is National Epilepsy Awareness Month, an important time to recognize the profound impact this neurologic condition has on children and their families, and to highlight the efforts being made to improve care and outcomes. 

To raise support for pediatric epilepsy research and patient care, University of Michigan Health C.S. Mott Children's Hospital is launching a fundraising campaign called Calming the Storm.

Epilepsy is one of the most common and serious neurologic conditions affecting youth, causing unpredictable and disruptive seizures, and often affecting cognitive and mental health. A seizure is an electrical storm in the brain that causes temporary changes in movement, awareness, or other important functions. The risk of injury from seizures, the time it takes to recover, and public misunderstanding often end up limiting the child’s participation in school and social activities. Calming the Storm aims to change this by bringing together the university community and the public to foster hope and develop solutions for patients and their families.

Persevering Through Adversity: Madison's Journey

Investments in advancing pediatric epilepsy care manifest in the remarkable recoveries of children like Madison. She had been having up to 20 seizures a day since she was 9. Her mother, Karen, came to Mott desperate for answers. It was there that Madison was diagnosed with Rasmussen’s encephalitis, an extremely rare condition that would only get worse over time. Madison needed brain surgery.

The procedure at Mott made "Miracle Maddy" seizure free, but she had to relearn basic functions like eating, talking, and walking. It’s been six years since the surgery and in that time Madison has pursued her goal of returning to general education classes and earning a high school diploma. She’s now a high school senior with ambitions of attending college, becoming a nurse, and sharing her journey with the world through a book.

Providing Essential Support

The Comprehensive Pediatric Epilepsy Program at Mott is at the forefront of epilepsy care for children. With continued support, Mott researchers can advance our understanding of pediatric epilepsy and develop groundbreaking therapies. For parents and loved ones, such commitment offers reassurance that every potential avenue is being explored in the quest to manage and eventually overcome this condition.

Additionally, the Calming the Storm campaign emphasizes the importance of comprehensive support for families navigating an epilepsy diagnosis, including psychosocial support programs and resources to address educational and emotional needs. The campaign also supports the training and development of the next generation of epilepsy specialists who will continue to advance the state of epilepsy care in Michigan and beyond.

“I remember the fear and uncertainty I had when I was diagnosed with epilepsy as a teenager. That makes it so inspiring to see the compassion and dedication of our teams at Mott as they work to ease the challenges and concerns of young patients with epilepsy,” said Luanne Thomas Ewald, chief operating officer of C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital. “And when our community comes together for a campaign like Calming the Storm, it is so uplifting for our patients and their families. We are not only advancing crucial areas of research and care, we are sharing incredible strength and support with our Little Epilepsy Victors.”

Ways to Help

There are several ways community members can contribute to Calming the Storm for children with epilepsy — from making a donation or purchasing a T-shirt, to hosting in-person or online fundraisers, or simply spreading awareness on social media. Every act of support makes a difference. Visit victors.us/calmepilepsy for more details on how to get involved and make an impact.

Join us this November during National Epilepsy Awareness Month to give children with epilepsy every opportunity to thrive and live seizure free.