KCNQ2 Connections
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…
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…
All that Jazz: Success of the 2024 New Horizons in Science Dinner
A night of jazz and jubilation in Melbourne at the fifth KCNQ2 Cure New Horizons in Science Dinner on April 11th. Volunteers decked out in New Orleans masks transformed host venue ANZ Bank into a “Big Easy” nightclub and welcomed guests with Mardi Gras beads, signature cocktails, and champagne. Jamming at the keyboard was the…
Picture 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 creating and capturing beautiful memories? Here, KCNQ2 mum Claire Audibert shares her thoughts on focusing on unique and small moments of happiness, and what lies…
How my daughter’s medical history is a Tool Towards a CURE
My daughter Ella was only a month old when the neurologist at the third hospital she was sent to that month said, “Just go home and love her. We don’t know what to do until genetic testing comes back.” At this time she was having around 7 seizures every hour and no medication we had…
Find Your Tribe
When tragedy strikes and your world is turned upside down, how do you start to recover? Who do you turn to for advice, reassurance, support? Here, KCNQ2 mum Claire Audibert shares how she found support in KCNQ2 Cure Alliance, and a sense of belonging to a community. A rare and catastrophic condition 9 June 2015:…
KCNQ2 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 innovative process to collect vital patient data that has already benefitted numerous rare disease and cancer communities. The Invitae Ciitizen platform allows data access for…
Carlo’s Story
It was back in 1843 that Charles Dickens penned what would become the immortal Yuletide tale, A Christmas Carol. The miser Scrooge learns the true meaning of Christmas when he is haunted by the Ghosts of Christmas Past, Present, and Future. “I see a vacant seat,” replied the Ghost, “in the poor chimney-corner. And a…
Gold Stars
A huge shout out to all our friends in the KCNQ2 Community for making the 2021 KCNQ2 Cure Virtual Summit such a smashing success. We are thrilled so many of you could participate live on Friday and Saturday, October 15 and 16. We’re excited to report that we had 125 people join our summit from…