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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…

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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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A Focus on Food

fiber bible

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…

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KCNQ2 Cure Alliance Announces Collaboration with KCNQ2.e.v.

KCNQ2 Cure Alliance Announces Collaboration with KCNQ2.e.v., of Trier, Germany KCNQ2 Cure Alliance today announced it is collaborating with KCNQ2 e.v., of Trier, Germany. Simone and Sebastian Bethge, whose son, Sepp, is affected by a KCNQ2 mutation, founded KCNQ e.v. to raise funds to support research to find a cure for KCNQ2 developmental and epileptic…

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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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