Patient Resources
Read through our How to SHINE Guide or learn about our partnership with SAMi below. Stay tuned for more information as we expand our knowledge base and resources.
Check out our Quick Reference Guide
Take a look at this comprehensive, user friendly, and interactive e-book for our SHINE/DLG4 community. We encourage you all to use it as a “living” resource that will be updated as needed. This is incredibly useful to friends, families, medical teams, and anyone interested in or affected by SHINE Syndrome. Please take a moment to look it over!
Medical Care Considerations
This Medical Care Considerations document was developed as a resource to assist and guide families and medical professionals caring for an individual with a DLG4-related synaptopathy diagnosis. Bring it to any doctor’s appointment to help them familiarize themselves with all the potential health concerns linked to this disorder and plan your loved one’s care.
Version Française
Versión en Español
Partnering with SAMi®
We are excited to announce that the SHINE Syndrome Foundation has partnered with SAMi®! SAMi® is a video-based sleep activity monitor for parents, caregivers and individuals
that need to watch carefully for unusual movements at night – specifically seizures. When abnormal movement is detected a loud alarm sounds and a live view is available to the caregiver. Events are automatically recorded and saved so that you can review and share with doctors. See the attached file for more details or take a look at the testimonial below from our President, Laura Palmer.