For individuals living with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC)—and the caregivers who support them—seizures are only part of the challenge. Behavioral challenges can also be disruptive—and far less supported.
That’s why we’re launching The Behavioral Impact Project: Amplifying Caregiver Voices– a large-scale survey designed to capture real-world caregiver experiences with harmful or disruptive behaviors in rare seizure disorders. We aim to include hundreds of caregiver voices.
For this project, the Dravet Syndrome Foundation is partnering with the LGS Foundation and the TSC Alliance.
Your input will enable us to:
- Create resources for caregivers to help better manage behavioral challenges.
- Make information available to clinicians, researchers, and advocacy groups to guide strategies for intervention and support.
- Educate Healthcare Providers, promoting better understanding of the behavioral challenges associated with rare seizure disorders.
Share Your Voice
The survey is confidential, takes just 20 minutes, and can help make a lasting difference.
Spread the Word
Share this initiative with fellow caregivers and families to increase participation. Visit this link and enter email addresses to send an invite to participate.
Together, we can advocate for the recognition and resources our community needs.
Our thanks to Jazz Pharmaceuticals for their financial support of this important work.
