Who We Are
Scarlett's GABRA1 Village is a small group of less than 50 families worldwide who have connected through social media. We started with a group of 2 in 2018 and now welcome new members from around the world, supporting their journey, giving them new information about the rare condition, collaborating on research, exposing members to new developments in treatment options, and provide a sense of community which is often isolating and uncertain in the world of rare diseases.
As new members are being diagnosed and are finding our group, we have been collecting natural history to gain perspective of the condition and where there is correlation and causation between the different mutations. The understanding of the natural history of a particular disorder is of importance both to the affected person and their family and to the physicians caring for them. It is useful information for researchers trying to determine the pathogenetic mechanism causing the disorder.
Currently, we are in the beginning stages to fund research looking for possible treatment options or a "cure" for GABRA1 and other related GABA-A mutations. We urgently need to raise funds in order to support and advance projects targeting therapeutic treatment solutions as soon as possible.