Mission Statement

Our mission is to improve the lives of all people affected by GNB1. We unite families from all over the world to offer practical resources and support. We work directly with researchers worldwide to coordinate and fund efforts to advance knowledge of and treatment for this rare genetic disorder.

Our Vision

We will improve the lives of all people affected by GNB1 through:

Catapulting research forward, prioritizing getting to patient trials of impactful treatments for the disorder itself and for its most difficult side effects.
Connecting families to each other to provide valuable experience and support, through our Facebook group, WhatsApp group, and emails.
Supporting research by encouraging families to sign up for the International Registry and International Natural History study, and providing researchers access to families.
Connecting families to resources that can help them get answers to pressing questions- researchers, clinicians, and other families.
Creating and promoting resources that drive important, impactful information to the people who need it. This involves getting resources to families through Social Media & email, but also through their doctors when they receive a new diagnosis.

Our Core Values

We prioritize and work hard for the good of ALL people affected by GNB1- never prioritizing one variant or one person over the group as a whole.
We are honest and realistic; we never create false hope.
We create duplicity; no one person will be the sole source of data, information, knowledge, or power.
We give our all, but recognize that we are busy parents to children with exceptional needs; the best we can do is enough.