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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…
Picture Perfect
It takes so much more energy When you love and live with someone who has a rare condition like KCNQ2, the day-to-day grind can feel overwhelming. How do you keep creating and capturing beautiful memories? Here, KCNQ2 mum Claire Audibert shares her thoughts on focusing on unique and small moments of happiness, and what lies…
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:…
Carlo’s Story
It was back in 1843 that Charles Dickens penned what would become the immortal Yuletide tale, A Christmas Carol. The miser Scrooge learns the true meaning of Christmas when he is haunted by the Ghosts of Christmas Past, Present, and Future. “I see a vacant seat,” replied the Ghost, “in the poor chimney-corner. And a…
This is us!!
THIS IS US! I don’t often share our private battle but it’s KCNQ2 awareness week March 1-7 and I want to be a part of the movement. So what is KCNQ2? It’s a severe rare epileptic disorder, but honestly, it’s different for every afflicted person, and family. So, what is KCNQ2 to Nolan? It is…
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…
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…