KCNQ2 Connections

KCNQ2 Strong

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…

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Find Your Tribe

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:…

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Ode to a Cure

kcnq2 phil pearl

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…

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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,…

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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…

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November is National Epilepsy Awareness Month

epilepsy awareness

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,…

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KCNQ2 Cure Down Under “New Horizons” Fundraiser Breaks Record

kcnq2 down under

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…

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GLOCAL – Brews for KCNQ2

glocal

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…

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KCNQ2 Cure represented at the 8th China Rare Diseases Summit

Our very own Tony Gleason recently had an opportunity to represent KCNQ2 Cure Alliance at the 8th China Rare Diseases Summit held in Shenzhen China. The summit had 18 sub-forums, 4 special conferences, and 3 satellite conferences, and had more than 130 speakers from all over the world. There were nearly 1,000 participants and more…

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Ray Of Hope

When KCNQ2 Mom Holley Moseley decided to write the story of her daughter’s harrowing odyssey from desperately ill child to cheerful teenager, she knew exactly what the title had to be. “She’s my Ray of Hope.” Ray of Hope tells the story of RayAnn Heller, a little girl born with rare genetic epilepsy KCNQ2. RayAnn…

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