Family Support

EEG / Epilepsy Gifts / Epilepsy / Educational Toy / Epilepsy book – Brave Bears Club (Char Bear LLC)
The first person to engage with me in the Infantile Spasms community following Owen’s diagnosis was Kate, founder of the Brave Bears Club. She immediately made me feel comfort, support and hope. Driven to raise awareness about this little-known condition, she began sharing her journey with her daughter’s diagnosis in hopes of offering comfort to other families facing Infantile Spasms. She has written a children’s book and designed the cutest teddy bear brand to support children and families affected. Owen is a proud owner of “Waves the Brave”.

National Association of Epilepsy Centers
NAEC is a nonprofit organization representing over 325 specialized epilepsy centers across the United States. It establishes standards of care and encourages their implementation through its accreditation program.

Home | REN
The Rare Epilepsy Network is a volunteer-based organization that collaborates with over 32 specific rare epilepsy organizations to unite around research initiatives. Combined, their efforts can enhance the lives of the individuals served. An epilepsy is considered “rare” when the underlying cause of epilepsy affects fewer than 200,000 individuals. Infantile Spasms are a rare epilepsy.

Brave Little Warriors | Infantile Spasms
Brave Little Warriors is a charitable foundation committed to improving the lives of children and families impacted by Infantile Spasms, a rare form of epilepsy.

Epilepsy Alliance America
Epilepsy Alliance America is a national organization committed to delivering support, care, and services to individuals living with epilepsy. It is made up of like-minded member organizations that collectively serve hundreds of thousands of people with epilepsy, along with their families, caregivers, and communities.

Home – Infantile Spasms Action Network
The Infantile Spasms Action Network (ISAN) has evolved into a collaborative network of 39 national and international organizations dedicated to raising awareness about infantile spasms. Each year during IS Awareness Week, ISAN members unite to inform the public and frontline medical professionals about the critical importance of early and accurate diagnosis.

Podcasts:
Seizing Life Podcast – CURE Epilepsy
Seizing Life is a weekly podcast produced by Citizens United for Research in Epilepsy, CURE. Hosted by Kelly Cervantes, a rare epilepsy mom and incredible epilepsy activist.

Episode 199 | Kate Kostolansky’s Story – A daughter with Infantile Spasms – Child Life On Call
Kate Kostolansky, another great advocate and epilepsy supermom to Char bear.