KCNQ2 Family & Research Summit 2027
About the Summit
Every champion deserves a champion. This is the weekend the whole KCNQ2 community stands together.
The Word
The word champion works as hard as the people it describes.
The people who spend their lives being someone else’s champion so rarely have a champion of their own. So we made a place where they do. Every champion deserves a champion. That’s why we gather.
Champion does three jobs at once, and this community is fluent in all three.
1
Champion noun
The one who steps forward on behalf of another.
That is every person at this summit: the ones who stand in for someone who cannot stand alone, and who have done it, quietly, for years.
2
To champion verb
To fight for. To defend. To refuse to give up.
It is what everyone in this community does, in exam rooms and laboratories, at IEP tables and kitchen tables, at conferences and at two in the morning: fighting for someone, and refusing to stop.
3
Champion adjective
First-rate. Of the highest heart.
Here, it has nothing to do with winning or ranking. It is a measure of heart. And by that measure, every family in this room is first-rate.
Who Are the Champions
Everyone here is someone’s champion.
Rare disease is isolating, and not only for the family. There is the scientist who may be one of only a handful in the world studying this gene. The clinician who has met a single case in an entire career. The sibling who has no words for it at the lunch table. Each carries something the people around them rarely understand. And each, in their own way, stands up for the same loved one, and for the community that loved one belongs to. Every one of them is a champion. This is the weekend they stand together.
The KCNQ2 Loved One
A champion in the fullest sense
The person at the heart of every other name on this page. They meet each day with a courage the rest of us can only hope to match, and they are the reason every other champion here shows up.
The Parent & Caretaker
Unconditional love
The ones who love without condition, and who stand up for the child or loved one everywhere it matters: the exam room, the classroom, the restaurant, and the late nights no one sees. A role they never applied for, and never leave.
The Sibling
Loyal beyond their years
The one who grew up a little faster. Who loves without being asked to, gives more than anyone notices, and will stand up for their person anywhere: the lunch line, the playground, and home, where love looks like a helping hand, a hug, a terrible joke (and the occasional gentle punch on the arm).
The Researcher
The science itself
The smallest, rarest patch of a vast discipline, chosen on purpose, tended by people who decided these loved ones deserved someone.
The Clinician
Behind the scenes
The one who fights for treatments, who champions a patient’s right to proper care when the insurer says no, and who urges the researchers onward. They carry the work from the laboratory to the living room, and back again.
The Community
The gathering itself
Built and tended by all of us, so that no one has to arrive alone. It is everyone in this room, holding the door open for whoever comes next.
Why we gather
You champion them. We champion you.
You are the one in your loved one’s corner, always. For three days, a whole community steps into yours. That exchange, the caregiver cared for, the advocate finally advocated for, is the entire reason this weekend exists.