KCNQ2 Connections

KCNQ2 Strong

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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KCNQ2: What’s in the Alphabet Soup?

what does kcnq2 stand for

Experts have known for some time what the KCNQ2 gene does, and it was named accordingly – “K” for the scientific symbol for potassium, “CN” as an abbreviation for channel, and “Q2” for the subtype Q2. But even scientists only recently understood the wide range of different variations in the “source” of the mutations and…

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KCNQ2 and Rare Disease Day 2017

rare disease week

Denver, Colorado The KCNQ2 Cure Alliance celebrated Rare Disease Day 2017 working to improve the lives of our children with efforts on multiple fronts. An international team of parents and KCNQ2 experts met in Denver today to set priorities for the coming year. At the same time, we were well represented in Washington D.C., as…

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Parents connecting in Germany

parents

The KCNQ2 community is growing rapidly due to better awareness by doctors, parents, and our international foundation. We know that getting answers is crucial for parents, and meeting others with the same diagnosis can be life-changing. After many months and sometimes years of uncertainty we all feel comforted in the knowledge that we are not…

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What’s in a name? KCNQ2 Cure Alliance

2016 summit

What’s in a name? The question sometimes comes up on how you name a foundation started for a condition such as KCNQ2 Encephalopathy. Coming off our third annual Summit, I thought it was timely to reflect on our name and the meaning behind it. Read straight through, it states our mission. KCNQ2. It reflects the…

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New Horizons of Pluto, Jupiter, and KCNQ2

kcnq2 awareness fundraise

  Hi Everyone – Welcome to our new blog. We want to keep you updated on some of the some of the great things so many people are doing on behalf of those with KCNQ2. We would like begin by extending a very special thank you to Tony Gleason. Some of you may have met…

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