Posts by Scotty Sims
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,…
Read MoreBuilding 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…
Read MoreThe 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…
Read MoreConnecting 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,…
Read More2025 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…
Read MoreObserver 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…
Read MoreKCNQ2 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…
Read MoreKCNQ2-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…
Read MorePicture Perfect
It takes so much more energy When you love and live with someone who has a rare condition like KCNQ2, the day-to-day grind can feel overwhelming. How do you keep…
Read MoreKCNQ2 Cure and Invitae/Ciitizen partner on new observational study
The KCNQ2 Cure Alliance is excited to announce that we have partnered with Invitae Ciitizen to develop an Observational Study for patients affected by KCNQ2-DEE. Invitae Ciitizen has developed an…
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