Search Results
Advocacy
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…
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…
This is us!!
THIS IS US! I don’t often share our private battle but it’s KCNQ2 awareness week March 1-7 and I want to be a part of the movement. So what is KCNQ2? It’s a severe rare epileptic disorder, but honestly, it’s different for every afflicted person, and family. So, what is KCNQ2 to Nolan? It is…
November is National Epilepsy Awareness Month
What is Epilepsy? Epilepsy is the general term for a variety of neurological conditions characterized by recurrent unprovoked seizures. A seizure is a brief disturbance in the electrical activity of the brain that causes temporary changes in movement, awareness, feelings, behavior, or other bodily functions. Epilepsy is one of the world’s oldest known medical conditions,…
KCNQ2 Cure Down Under “New Horizons” Fundraiser Breaks Record
The fourth KCNQ2 Cure New Horizons in Science Dinner smashed fundraising records for KCNQ2 Cure Down Under. The dinner in Melbourne, Australia raised $160,000 for medical research to find a cure for KCNQ2 — double the previous amount. The dinner showcases star scientists from around the world and raises awareness about KCNQ2 genetic epilepsy. KCNQ2…
GLOCAL – Brews for KCNQ2
On Saturday, October 19th we got a chance to celebrate our community, raise some money and awareness for KCNQ2 Cure. We hosted an event at the Silver Branch Brewing Company in Silver Spring, Maryland. Silver Branch hosts a monthly charity event and we managed to get the slot for October. From 1:00 to 4:00 we…
Working Together for Early Diagnosis of Rare Epilepsies
In the middle of August, I had the opportunity to spend an afternoon in Chicago meeting with a group of people from the world of rare diseases. Biomarin invited a group of us to meet to discuss genetic testing in our world of rare epilepsies. Biomarin has been in our world for a while now….