KCNQ2 Connections

Healthcare for Disabled Children Secured

irish bill

We are so excited to share the tremendous achievement of our own Mark Fitzpatrick of Dublin, Ireland.  Through Mark’s unwavering efforts over nearly three years, he has secured the right to much needed medical care for thousands of Irish children with disabilities.  Thanks to Mark, no new parents in Ireland will have to go through…

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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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KCNQ2 author Krystal Givens

Jake KCNQ2

Q&A with Krystal Givens, author of: A Song for Someone Special What a journey to write a book! How did you go about writing, illustrating, publishing and now selling A Song for Someone Special? I always sing to my babies when they are little and I had been singing this song to Jake and my…

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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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Old Friends, New Research, and How to See Around Corners

orrin research

  Old Friends, New Research, and How to See Around Corners Hi Everyone – Lots of exciting things are happening in the KCNQ2 community in cities and towns all over the world and I’ll keep you posted through this blog. Today’s news comes direct from the Big Apple. Dr Orrin Devinsky has joined the Scientific…

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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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