KCNQ2 Connections
KCNQ2 Cure Down Under “New Horizons” Fundraiser Breaks Record
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…
GLOCAL – Brews for KCNQ2
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…
Working Together for Early Diagnosis of Rare Epilepsies
In the middle of August, I had the opportunity to spend an afternoon in Chicago meeting with a group of people from the world of rare diseases. Biomarin invited a group of us to meet to discuss genetic testing in our world of rare epilepsies. Biomarin has been in our world for a while now….
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…
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…
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…
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…
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…
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