KCNQ2 Connections
A Focus on Food
Here at KCNQ2 Cure, especially during COVID-19, we find ourselves thinking a lot about food. Searching for new recipes. Recently, I caught up with a friend Down Under who has been doing the same thing. A cook herself, she wrote a magazine about it. Here is my interview…. Australian Pete Heine tells me she always…
KCNQ2-DEE Clinical Trial
Xenon Pharmaceuticals is currently developing XEN496, which is a proprietary pediatric formulation of the active ingredient ezogabine, for the treatment of KCNQ2 developmental and epileptic encephalopathy (KCNQ2-DEE). Ezogabine was previously approved by the U.S. Food and Drug Administration (FDA), as an anti-epileptic drug as an adjunctive treatment for adults with focal seizures with or without…
Ode to a Cure
Our KCNQ2 Cure pal Dr. Phillip Pearl is on the front lines of the battle against COVID-19. Dr. Pearl is the Director of Epilepsy and Clinical Neurophysiology at Boston Children’s Hospital and a professor of neurology at Harvard University. He’s also a celebrated jazz musician. When I spoke to him recently, I asked him if…
KCNQ2 COVID-19 Emergency Relief Grant Program
KCNQ2 COVID-19 Emergency Relief Grant Program We at the KCNQ2 Cure Alliance have spent the last few months split between wrangling our own families (who knew 2020 would give us the opportunity to try out being full-time chefs, teachers, coaches, nurses, and teleworkers all at once?) and thinking about our KCNQ2 community. In early May,…
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…
How do matching gift programs work?
What is a matching gift? A matching gift is a charitable donation your company gives on your behalf. It is based on donations you’ve provided an organization. How do companies decide which organizations to support? According to Double the Donation, “restrictions for eligibility ultimately fall to the employer, but the most common restriction is for…
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….
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