KCNQ2 Connections
Reflections from the 2025 KCNQ2 Cure Summit in Philadelphia
From September 26th to 28th, 162 members of the KCNQ2 community came together in Philadelphia for our 8th Family and Professional Summit. Attendees traveled from 22 states and six countries, joined by more than 30 researchers, clinicians, and industry partners. We were thrilled to welcome over 20 first-time families, nearly 20 KCNQ2 Cuties, and a…
Building Momentum: Insights from the KCNQ2 Research Roundtable
At this year’s KCNQ2 Cure Alliance Family and Professional Summit, Drs. Brooke Babineau and Alfred George brought together leaders from the scientific, clinical, and patient advocacy communities for a Research Roundtable. The goal was to shed light on emerging discoveries in KCNQ2-related disorders while underscoring the ongoing challenges in identifying effective treatments. We left the…
The Power of a CRID for Every KCNQ2 Family
Living with KCNQ2-related disorders means navigating a world of challenges-seizures, developmental hurdles, motor difficulties, behavioral complexities, and more. For those of us in the KCNQ2 community, the urgency for better treatments and brighter futures is personal. We want answers, and we want them now. But one major roadblock is that our community’s vital health data…
Connecting Science and Community: Dr. Brooke Babineau Charts KCA’s Research Path as New Scientific Director
Hi! I’m Brooke Babineau, the new Scientific Director for the KCNQ2 Cure Alliance (KCA). I’m honored to join this devoted community and support a mission that empowers families through education, meaningful connections, and advances in innovative research focused on the development of new treatments—and ultimately, cures —for people affected by KCNQ2-related disorders. A bit about…
Reflections from the Rare As One Meeting
Reflections from the Rare As One Meeting: A Joint Message from Our Executive and Scientific Directors We recently returned from an invigorating three-day convening of the Chan Zuckerberg Initiative’s Rare As One (RAO) Network in the Nevada desert. This gathering brought together foundation leaders, scientists, and strategic partners who all share a mission to accelerate…
2025 KCNQ2 Roadshow Coming to a City Near You?
2025 KCNQ2 Roadshow: Join the Movement to Advance Research in Your City CLICK TO PARTICIPATE 🚐 KCNQ2 Cure Is Coming to You in 2025 We invite individuals with a confirmed KCNQ2 diagnosis to participate in our KCA Biobank. This is your chance to drive real progress in rare disease research…close to home. In 2025, the KCNQ2…
The Power of 10
KCNQ2 Cure 10th Anniversary: Celebrating a Decade of Progress and Community This year, KCNQ2 Cure turns 10. Double digits! We can scarcely believe it, either. We’ve come a long way. In 2011, 1 family created a Facebook group. That 1 became 10, then 100. In 2025, nearly 1,000 families in 66 countries are part of…
Observer Reported Toileting Abilities Survey (ORTAS)
As part of our partnership with CombinedBrain, we are sharing a pilot study with our community. We are conducting a pilot study for our ORTAS toileting survey! What: A 30-minute online survey consisting of questions about a person’s diagnosis, symptoms, treatments, and ability to toilet independently, or not. Any level of ability is welcome to…
KCNQ2 Cure Alliance Awarded Chan Zuckerberg Initiative Rare As One Grant
Funding to Strengthen Organizational and Research Capacity to Accelerate Research for KCNQ2-Related Disorders We are thrilled to announce that the Chan Zuckerberg Initiative (CZI) has selected the foundation to receive a Rare As One Network grant. This award will be critical in accelerating operational efforts and supporting individuals and families impacted by KCNQ2-related disorders. “We are deeply…
KCNQ2-Related Epilepsy ICD-10 Codes Approved!
What is an ICD-10 Code? Developed by the World Health Organization (WHO), this is the tenth version of the International Classification of Diseases (ICD), known as ICD-10. It is a system used worldwide by doctors, hospitals, insurance companies, and health organizations to classify and code all diagnoses, symptoms, and procedures. Each code is unique and…