Living with 8A often means spending hours navigating insurance companies, coordinating medical care, sending difficult emails to doctors, completing paperwork, and managing countless other tasks that most people never see. […]
Join the TCSF Book Club for an engaging discussion on our latest book selection! Whether you’re an avid reader or just looking to connect with the SCN8A community, this is a great way to unwind and share thoughts. Check the support group for the latest book announcements and discussion topics! If you’d like help obtaining […]
Epilepsy affects many individuals and families in our SCN8A community, shaping daily life in ways both seen and unseen. This month, we're raising awareness by creating special profile frames and […]
Join Dr. Lauren Treat and Dr. Anna Leigh McVicar of Children’s Hospital Colorado for a family-friendly introduction to dysautonomia and how it can affect some children with neurodevelopmental disorders like SCN8A. Through a brief overview and real-world case examples, we’ll explore how autonomic symptoms can present, what families may notice, and how these symptoms may […]
Join The Cute Syndrome Foundation for our 12th Annual SCN8A Clinician, Researcher, and Family Gathering in Denver, Colorado, on December 4–5, 2026! This annual event brings together SCN8A families, clinicians, […]
Take a break and join us for our monthly Chaos, Coffee & Chitchat Club! This hour-long, volunteer-led meetup is designed for SCN8A caregivers to come exactly as you are—no structure, no agenda, just space to connect with others who truly understand. Whether you’re juggling appointments, sipping coffee in pajamas, or just need to be around […]
Join other families and the TCSF team to share experiences, ask questions, and find connections—whether you’re newly diagnosed or just ready to meet the community. When: Nov 9, 2026 12:00 PM Eastern Time Register in advance for this meeting: https://us02web.zoom.us/meeting/register/kD1LUGF4SbiS_beICmCeQg
Speakers: Dr. Nancy McNamara, MD, Division Chief of Pediatric Neurology, Corewell Health East Monika Jones, JD, Executive Director & Founder, Pediatric Epilepsy Surgery Alliance Description: Join The Cute Syndrome Foundation and guest speakers from the Pediatric Epilepsy Surgery Alliance (PESA) for an educational webinar on neuromodulation and surgical options for SCN8A-related epilepsy. In this session, […]
Nominate your doctor for the Champions for Understanding, Treating, Investigating, and Empowering those with SCN8A (CUTIES) Award. This award will be presented to a clinician who has: Exceeded expectations of […]
People of all ages with epilepsy and their families and friends are invited to attend the Epilepsy Day at Disneyland Expo, featuring non-Profit support groups, epilepsy centers, drug and related product manufacturers, seizure dogs and their trainers, and epilepsy professionals from around the world. Come by the expo to visit The Cute Syndrome Foundation's table […]
People of all ages with epilepsy and their families and friends are invited to attend the Epilepsy Day at Disneyland Expo, featuring non-Profit support groups, epilepsy centers, drug and related product manufacturers, seizure dogs and their trainers, and epilepsy professionals from around the world. Come by the expo to visit The Cute Syndrome Foundation's table […]
Living with 8A often means spending hours navigating insurance companies, coordinating medical care, sending difficult emails to doctors, completing paperwork, and managing countless other tasks that most people never see. These responsibilities can feel overwhelming—but they don't have to be faced alone. Community Power Hour is a virtual coworking session that offers accountability, connection, and […]