KCNQ2 Connections
AES 2018
AMERICAN EPILEPSY SOCIETY 2018 and KCNQ2 The annual meeting of the American Epilepsy Society (AES) is the premier scientific meeting for the physicians, scientists, pharmaceutical industry, and patient groups engaged in epilepsy and related diseases, such as KCNQ2. Our time at the AES meeting in New Orleans this month was a time of learning, seeing…
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…
KCNQ2: What’s in the Alphabet Soup?
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…
Support KCNQ2 Cure Alliance every time you shop on Amazon
Donating to the KCNQ2 Cure Alliance is as easy as shopping online… literally! You can give even more when you sign up for AmazonSmile – a simple and automatic way to donate to the Foundation while you shop on Amazon. The best part? It costs nothing to you! How it works: Amazon will donate 0.5%…
Healthcare for Disabled Children Secured
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…
KCNQ2 and Rare Disease Day 2017
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…
KCNQ2 author Krystal Givens
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…
Parents connecting in Germany
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…
What’s in a name? KCNQ2 Cure Alliance
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…
Old Friends, New Research, and How to See Around Corners
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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