The KBG Syndrome Association is the #1 place I go to when I am seeking sound, responsibly-sourced research and resources. They are committed to integrity when it comes to KBG resources for families, schools, and providers as well as connecting folks to ways to securely donate to trustworthy organizations which research KBG and work on behalf of KBG families. They have big dreams for connecting KBG families and fostering a community where they can feel safe and supported and they haven’t wasted any time making those dreams start coming true. They organized the largest North American KBG Syndrome gathering, to date. Why? Because they knew it was vital for families and researchers and, well, because they said they would - and they follow through on their promises. Gathering with this community was life-changing for our family who, until then, felt isolated and unsupported in our KBG journey - we left knowing that no KBG families fight alone. The KBG Syndrome Association also administers the Kids with KBG Facebook group, offering a supportive, safe, virtual community for KBG caregivers and the awesome humans who give KBG Syndrome a face. I love that they insist that advice given in that virtual village comes from personal experiences on the KBG journey, rather than blanket statements or guarantees as if these things are a one-size-fits-all. They also understand the difference between anecdotal Facebook polls and actual peer-reviewed research. Finally, they encourage not only supporting one another through the challenges but being sure to celebrate the joys and accomplishments along the way. The KBG Syndrome Association is a premier example of advocacy and community-building done right and I can’t wait to see all that they help our KBG community achieve!