KCNQ2 Connections

Advocacy

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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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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