KCNQ2 Connections

Advocacy

November is National Epilepsy Awareness Month

epilepsy awareness

What is Epilepsy? Epilepsy is the general term for a variety of neurological conditions characterized by recurrent unprovoked seizures. A seizure is a brief disturbance in the electrical activity of the brain that causes temporary changes in movement, awareness, feelings, behavior, or other bodily functions. Epilepsy is one of the world’s oldest known medical conditions,…

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KCNQ2 Cure Down Under “New Horizons” Fundraiser Breaks Record

kcnq2 down under

The fourth KCNQ2 Cure New Horizons in Science Dinner smashed fundraising records for KCNQ2 Cure Down Under.  The dinner in Melbourne, Australia raised $160,000 for medical research to find a cure for KCNQ2 — double the previous amount.  The dinner showcases star scientists from around the world and raises awareness about KCNQ2 genetic epilepsy. KCNQ2…

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GLOCAL – Brews for KCNQ2

glocal

On Saturday, October 19th we got a chance to celebrate our community, raise some money and awareness for KCNQ2 Cure. We hosted an event at the Silver Branch Brewing Company in Silver Spring, Maryland. Silver Branch hosts a monthly charity event and we managed to get the slot for October. From 1:00 to 4:00 we…

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KCNQ2 Cure represented at the 8th China Rare Diseases Summit

Our very own Tony Gleason recently had an opportunity to represent KCNQ2 Cure Alliance at the 8th China Rare Diseases Summit held in Shenzhen China. The summit had 18 sub-forums, 4 special conferences, and 3 satellite conferences, and had more than 130 speakers from all over the world. There were nearly 1,000 participants and more…

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KCNQ2 Cure Alliance Joins Epilepsy Foundation Research Roundtable

On March 21-22, I had the opportunity to represent the KCNQ2 Cure Alliance at the 2019 Research Roundtable for Epilepsy organized by the Epilepsy Foundation. Now in its fourth year, the annual meeting brings together patient advocacy organizations with leading epilepsy experts from research organizations and pharmaceutical companies with regulators from the Food and Drug…

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Rare Disease Legislative Advocates

Last week I spent two days around the halls of Congress, lobbying as part of the Rare Disease Week activities on Capitol Hill, organized by the Rare Disease Legislative Advocates (RDLA). Each year, hundreds of rare disease advocates from all across the country and all political stripes descend on Washington DC to help lawmakers better…

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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…

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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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