Current Events and Announcements
These are a few current events and announcements. Check back regularly for updates.
Winter 2023 Newsletter
Exciting updates about what’s going on with the foundation, research and the community
- Epilepsy Paper
- ICD-10 Code Presentation
- Medical Care Considerations
- Global Genes Conference
- and more!
- Click here to read!
Meet Our New Board Member
We are pleased to welcome our newest board member, Tim Stuart! Tim resides in Connecticut with his wife Tracy, son Travis, and daughter Lilia who was diagnosed with SHINE Syndrome in 2020. Find Tim’s full bio here, and please join us in welcoming him to the team.
SHINE Spring 2023 Newsletter
Take a look at the latest newsletter for updates on:
- AAV Treatment Research
- Research Updates
- Fundraising Events
- SHINE Star
- And More!!
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View previous newsletters or announcements Here
