Jason’s Story: Turning Empathy Into Action While Living With Epilepsy
For Jason Raether, his epilepsy diagnosis only deepened his empathy and strengthened his commitment to educating those around him.… Read More
Shannon’s Story: Building a Strong Support System While Living With Epilepsy
Living with epilepsy is a journey full of unknowns. For Shannon, a father from Louisiana, those unknowns brought fear, loss of independence, and emotional challenges. But through resilience, advocacy, and support, he’s found hope and a new path forward.… Read More
Strength and Resilience: Kailey and Alan’s Journey with Epilepsy
Kailey and her father Alan’s journey with epilepsy has been one of perseverance and hope, marked by years of searching for the right treatment.… Read More
Epilepsy Patient Advocacy and the RISE Clinical Trial
RISE: A Clinical Trial For Epilepsy I recently had the opportunity to speak with Anne Neumann, RN, BSN, Rare Disease Marketing, Patient Advocacy and Engagement Lead at Biohaven, about her role and about RISE: A Clinical Trial For Epilepsy. Background on Ms. Neumann Anne brings over 25 years’ experience in healthcare, from … Read More
National Epilepsy Awareness Month: Why Advocacy Matters
November is National Epilepsy Awareness Month—a time to amplify the voices of the 3.4 million Americans living with epilepsy. Advocacy is crucial, helping to dispel myths and foster understanding. … Read More
CURE Epilepsy Hosts Event to Kick Off Epilepsy Awareness Month
The CURE Epilepsy team has invited me to share info on a fundraising event they are hosting in NYC in honor of Epilepsy Awareness Month. This unique event will feature famous soprano Renée Fleming in conversation with a neurologist, a music therapist, and our immediate past board chair Kelly Cervantes about the … Read More
Interview with Biohaven Medical Director on RISE A Clinical Trial For Epilepsy
RISE: A Clinical Trial For Epilepsy I recently had the opportunity to speak with Jason Lerner, MD, Medical Director Research and Development at Biohaven, a board-certified pediatric neurologist and epileptologist about his role and about RISE: A Clinical Trial For Epilepsy. Background on Dr. Lerner Before joining Biohaven in the spring of … Read More
Epilepsy Blog Relay: The Tuholskys manage epilepsy together as a family
Meet the Tuholsky family and learn about their journey with their son Kyle’s epilepsy. They are remaining positive and advocating for better seizure control.… Read More