Family Resources
If you are a parent or carer of a child with Schinzel-Giedion Syndrome, please enroll in our registry to help advance understanding of this rare genetic disorder.
Practical tools and trusted information for everyday life with SGS
Living with Schinzel-Giedion Syndrome (SGS) often means navigating complex medical, developmental and day-to-day care decisions. Families frequently seek reliable, accessible information to help them better understand their child’s needs and to support informed discussions with their clinical teams.
This page brings together trusted external resources that many SGS families have found helpful. The SGS Foundation does not endorse specific treatments or approaches; rather, we aim to signpost reputable information so families can explore options in partnership with qualified healthcare professionals.
🧠 Seizures & Epilepsy Support
Many children with SGS experience seizures or developmental epileptic encephalopathies (DEEs). Understanding seizure types and patterns can help families communicate effectively with clinicians and recognise changes early.
Epilepsy Foundation Epilepsy Foundation #1 trusted site for epilepsy and seizure news
A comprehensive and accessible resource providing clear explanations of seizure types, treatment options, rescue planning, safety guidance, first aid, daily living considerations and practical support for families navigating epilepsy.
What Is Epilepsy? | Epilepsy Foundation
Types of Seizures | Epilepsy Foundation
Diagnosis | Epilepsy Foundation
Epilepsy Treatment | Treating Seizures | Epilepsy Foundation
Seizure Tracker App
A free tool that allows families to log seizures, medications and patterns, and generate reports to share with medical teams. Structured tracking can strengthen clinical discussions and treatment planning. The app is available in multiple languages, making it accessible to families worldwide.
https://seizuretracker.com/
🎓 Education & Webinars for Medically Complex Children
Families often benefit from learning from experts across neurology, gastroenterology, sleep medicine and complex care.
Deep Connections Resource Centre
A comprehensive webinar library covering epilepsy, sleep, ketogenic diet, dental care, gastrointestinal health, travelling with a medically complex child, clinical trials, oral health for non-oral feeders, and more.
https://deepconnections.net/webinars/
These sessions provide practical education for families navigating developmental and epileptic encephalopathies and related complex needs.
🥣 Nutrition & Feeding
Feeding challenges are common in SGS, and nutritional approaches vary depending on a child’s medical and developmental needs. Some families explore blended diets alongside standard enteral feeding options.
The Foundation does not recommend specific feeding strategies. However, families who are interested in learning more about blended diets may find peer discussion helpful.
Blending Hope – Blended Diet Tube Feeding Community
A Facebook support group where families share experiences and practical insights about blended diets.
Request to join group here https://www.facebook.com/groups/656463239084537
Any changes to feeding approaches should always be discussed with your child’s healthcare professionals to ensure safety and nutritional adequacy.
👁 Vision & Cortical Visual Impairment (CVI)
Cortical Visual Impairment (CVI) is increasingly recognised in children with complex neurodevelopmental conditions and appears to be common in children with Schinzel-Giedion Syndrome (SGS). Early recognition and tailored educational strategies can significantly improve engagement, communication and developmental progress.
Perkins School for the Blind – CVI Resources
The Perkins CVI site includes extensive information and practical guidance. We have highlighted some resources that may be especially helpful as a starting point. This is not an exhaustive list, and families are encouraged to explore the wider site for additional materials.
- What is CVI?
- When to Suspect Article
- Getting started with CVI assessments
- 7 downloadable one-pagers essential for CVI advocacy
- CVI 1:1 Parent Support
- Private Caregiver Facebook Link
- Doctor Directory:
- EI Series
- IEP Guide
- IEP Checklist
- CVI and Rare Diseases
- DEE-P Series
- Compensatory Skills
- CVI research opportunities
- How to add routine and play-based learning into ECC strategies for young kids with CVI
- 7 early literacy experiences for kids with CVI
Growing This Resource Library
We recognise that families living with SGS often need information across many domains — including respiratory care, sleep, equipment, schooling and long-term planning. This page will continue to evolve as we identify additional high-quality resources.
If there are trusted resources you have found helpful, please contact us at contact@sgsfoundation.org so we can consider adding them
Medical Disclaimer
The information and external resources provided on this page are for general educational purposes only and are not intended as medical advice. Always consult your child’s qualified healthcare professionals before making changes to medical treatment, nutrition, or care plans.