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Promising Results from EMBOLD Study: What this Means for the KCNQ2 Community
KCNQ2 Cure Alliance attended the American Epilepsy Society (AES) meeting this week. One of the biggest pieces of news shared was positive results from a clinical trial testing a new anti-seizure medication in individuals with developmental epileptic encephalopathy. Read more below on what this means for our KCNQ2 community and stay tuned for more AES…
Reflections from the 2025 KCNQ2 Cure Summit in Philadelphia
From September 26th to 28th, 162 members of the KCNQ2 community came together in Philadelphia for our 8th Family and Professional Summit. Attendees traveled from 22 states and six countries, joined by more than 30 researchers, clinicians, and industry partners. We were thrilled to welcome over 20 first-time families, nearly 20 KCNQ2 Cuties, and a…
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…
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…