Advancing research in
the search for better
treatment options and a CURE

unity. hope
strength. love

Our urgent goal: Cure KCNQ2.
We can't do it without you.

Learn more about the
KCNQ2 Cure card and
get yours today

 

You are not alone. Connect with other families, get support, and locate resources.

Follow the latest research on KCNQ2 and learn how to participate.

There are many ways to help and to participate in the KCNQ2 movement.

Become a KCNQ2 champion. For every dollar you contribute, we are one step closer to a CURE.

KCNQ2 fundraiser handbook

KCNQ2 Cure's Fundraising Handbook

Be an active supporter in the quest to cure KCNQ2 Developmental and Epileptic Encephalopathy. Download our toolkit to launch your personal fundraising event.

Subscribe to the KCNQ2 Connections Newsletter

For news and updates on the latest KCNQ2 research, clinical trials, conferences, and family meet-ups.

KCNQ2 Connections

KCNQ2-DEE Clinical Trial

clinical-trial

Xenon Pharmaceuticals is currently developing XEN496, which is a proprietary pediatric formulation of the active ingredient ezogabine, for the treatment of KCNQ2 developmental and epileptic encephalopathy (KCNQ2-DEE). Ezogabine was previously approved by the U.S. Food and Drug Administration (FDA), as an anti-epileptic drug as an adjunctive treatment for adults with focal seizures with or without…

Read More...

Ode to a Cure

kcnq2 phil pearl

Our KCNQ2 Cure pal Dr. Phillip Pearl is on the front lines of the battle against COVID-19. Dr. Pearl is the Director of Epilepsy and Clinical Neurophysiology at Boston Children’s Hospital and a professor of neurology at Harvard University. He’s also a celebrated jazz musician. When I spoke to him recently, I asked him if…

Read More...

KCNQ2 Collaborations

IMG_3767

Collaboration is key to efficiently advancing our mission to improve the lives of patients with KCNQ2 developmental and epileptic encephalopathy.

While KCNQ2 itself is a rare disease, it has many commonalities with other rare and not-so-rare disorders, and manifests with symptoms – such as autism, sleep and mood disorders, and GI issues – that are seen quite commonly.  We welcome discussions and partnerships with doctors, researchers, academic institutions, biopharmaceutical companies, and patient organizations, on a global basis, who share our passion of advancing treatments for patients with KCNQ2.  If you are interested in opening the dialogue with KCNQ2 Cure Alliance, please contact Caroline Loewy.

KCNQ2 Summit

KCNQ2 Natural History Study

Click here to find out how to enroll in the KCNQ2 Natural History Study at Boston Children's Hospital

Our Partners