What does it take to prevent a tragedy that many don’t even know could happen? How do we empower families and caregivers to better support those living with epilepsy? And why is awareness around SUDEP—Sudden Unexpected Death in Epilepsy—so urgently needed?

This episode of Seizure Diaries tackles these essential questions and more in a powerful and informative conversation. Hosts Kent Leyde and Doug Sheffield of Cadence Neuroscience welcome their very first guest, Tom Stanton, President of The Danny Did Foundation.

Tom shares the heartbreaking story of his nephew Danny’s passing from SUDEP—a turning point that led to the foundation’s mission to increase awareness, support families, and advocate for real change in epilepsy care.

Listeners will hear:

• Danny’s story, told by his uncle, Tom
• challenges and improvements in SUDEP awareness
• technological advances in seizure detection
• support systems for the caregiver burden
• ways to get involved and support the cause
• the importance of patient awareness
• how the Foundation is addressing critical gaps in education and communication around epilepsy, while championing both innovation and compassion

This episode sheds light on how knowledge and collaboration can save lives. Tom discusses the importance of empowering families with resources, building stronger bridges between clinicians and advocates, and ensuring that no family facing epilepsy has to navigate it alone.

More about Cadence Neuroscience:

Cadence Neuroscience is currently developing an investigational BTS [Biomarker Targeting Stimulation] device therapy for the treatment of drug-resistant focal epilepsy, based on pioneering work performed by researchers at Mayo Clinic. Learn more at cadenceneuro.com.

The Danny Did Foundation:

Learn more about The Danny Did Foundation and how to support the organization at their website: https://www.dannydid.org/about-danny-did/.

Mentioned in this episode:

AES - American Epilepsy Society

AAN - American Academy of Neurology

Dravet syndrome - Dravet Syndrome Foundation