Supporting SYNGAP1 Siblings

It is difficult living with SYNGAP1 for all members of the family, including, and sometimes especially siblings. This page is dedicated to all of the Sibling Warriors our there – older, younger, brother, sister, blended, etc. We see you, and we appreciate everything you do for your family and understand the sacrifices you are asked to make. You are important in the lives of your family members as well as all of us in the SynGAP Research Fund.

Tell Your Story – Be Featured as an SRF SYNGAP1 Sibling Warrior

We’d love to hear & share your story, in your own words or as told by others. You’re already a Super Sibling – let the world know! Reach out to Deanna@CureSYNGAP1.org.

Parent Communication and Sibling Knowledge of Neurogenetic Conditions

A genetic counselor at Cincinnati Children’s is asking for our participation in a survey! This one’s to help develop resources for siblings of someone with a neurogenetic diagnosis, e.g., #SYNGAP1! The survey is in two parts, one for the parent of the Syngapian and one for the sibling aged 7-17. This runs through approximately April 30, 2024.
Survey – https://redcap.link/r82457y1
More information is available here.

Get Your VIP Caregiver & Sibling Kits Today

Now, thanks to continued collaboration with UCB and more than 10 rare epilepsy advocacy groups, we are now able to provide the below important new resources to support siblings and their families.

*Note UCB is currently only sending kits to US addresses.

VIP Sibling Kits are made available to families at no charge, thanks to support from our partners at:


There are Others Who Understand What It’s Like Living With a Syngapian

Siblings need support as much as parents – sometimes even more. Join other SYNGAP1 siblings to discuss whatever is on your mine. Make connections, talk about issues that are on your mind, and find your own community within SRF. You are not alone!


Here is a list of Blogs and Videos from and about SYNGAP1 Siblings: