Newly Diagnosed

I could never have known on that diagnosis day that what seemed like a lonely time would become a wonderful world of people who love our child just as much as much as we do.

– Marilyn Maloney

Newly Diagnosed

I could never have known on that diagnosis day that what seemed like a lonely time would become a wonderful world of people who love our child just as much as much as we do. – Marilyn Maloney

We know that a KCNQ2 diagnosis can be overwhelming.

You may be confused, scared, frustrated, or uncertain—and your emotions may change from day to day, sometimes even hour to hour.

As parents of children with KCNQ2, we know what it's like to feel overwhelmed and isolated – especially in the days and weeks after your child's diagnosis. But we're here to tell you there is HOPE.

You are not alone. You are now part of KCNQ2 Cure: a network of families, researchers, clinicians, and other professionals who are determined to make a difference. Our community of families and experts are available to help you navigate your journey.

KCNQ2 is a very rare disease, first identified in 2012. As a result, your doctor may not be familiar with KCNQ2, and you may need to take the lead in learning more about your child’s condition from our KCNQ2 community.

KCNQ2 affects many aspects of a patient’s life, so we encourage you to take a comprehensive approach; making sure your child is on the best medications for the treatment of seizures or other symptoms, being sure to engage with all of the specialists who may be helpful – from geneticists to neurologists, to gastroenterologists, evaluating potential vision or hearing issues, and engaging therapists to address physical, cognitive and speech issues as early as possible.

Navigating KCNQ2:
A Guide for Parents
and Caregivers

Download

Our Recommendations/Checklist

Our families have created a list of recommendations for newer families. These are a good starting point for learning more about KCNQ2-related disorders and resources.