One of the chief means of support comes through interacting with other parents. Our Facebook Group is a place where you can ask any question you want, where it is safe to vent your anger and frustration, share your grief and heartbreak, and celebrate the joys and successes that will also come along. You can do all of this in the context of a non-judgmental community that truly understands what you are experiencing.
To sign up for the group you will need to have a Facebook account. Even if you don’t typically use Facebook, we suggest creating an account and joining the group. We have found this to be the best platform for hosting this kind of support group.
To join, visit the Facebook group at:
Click “Join” and answer the questions. We ask questions to ensure that only parents and caregivers join this group. An administrator will approve your membership and you can begin communicating with other parents from all over the world.
Several other organizations exist that can help with specific aspects of the journey.
Ketogenic Diet: Charlie Foundation
Epilepsy in General: Epilepsy Foundation
Friends and Family
This is a journey that is hard to make alone. At times you will need to enlist the support of friends and family. This is especially true in families that have more than one child, or single-parent households. Caring for someone with Doose syndrome can be difficult and exhausting. Refer them to this site so they can read about what you are facing. Be honest with your friends and family about how you are feeling and coping with this diagnosis. Your friends and family will want to help, tell them how and then let them.