You Don’t Have To Walk This Path Alone
Join our parent support group for families with a child with KCNA2
Parenting a child with KCNA2 can feel like uncharted territory. Between seizures, therapies, school decisions, equipment needs, and the constant juggling of everyday life, the stress and pressure add up quickly. Doctors and specialists are essential but sometimes what you need most is to hear from someone else who has walked in your shoes.
That’s why our parent-led support groups exist. They’re places to ask questions, share experiences, and connect with families who truly understand what KCNA2 brings into daily life.
KCNA2 Epilepsy Parent Group (English, private)
This private Facebook group is open only to parents and caregivers of children with a confirmed KCNA2 diagnosis. We limit access to this group so families can safely share their stories and ask the questions that don’t always fit in a doctor’s office.
These can include personal experiences around:
- Which seizure meds are working (and which aren’t)​
- How to navigate school transitions and IEPs
- Coping strategies for siblings
- Tips for equipment, therapies, and daily routines.
- The stress and mental load of caregiving itself.
Every post is met with lived experience and practical advice from parents who’ve been there.
Potassium Channel Epilepsies Support Group (Open to all)
KCNA2 is part of a larger family of potassium channel epilepsies. This group welcomes families across the “K” genes: KCNA1, KCNT1, KCNQ2, and more. It’s a place to connect with parents and caregivers navigating similar challenges, and to see where our stories overlap. Many KCNA2 families find strength and information from being part of this wider circle.
KCNA2 Epilepsy - Global Connection Group
This is our public-facing Facebook group where anyone who cares about a KCNA2 family can stay connected. Unlike the private family groups, this space is open to relatives, teachers, babysitters, caregivers, and friends who want to follow along and show their support.
Here, we share updates that don’t involve private family matters: community events, holiday celebrations, research team meetings, photos, and opportunities to donate. Because it’s public, families are mindful not to post sensitive personal details, but it’s still a welcoming hub where the broader community can learn, cheer us on, and join in raising awareness.
Why These Groups Matter
Some families join to ask urgent questions, others share hard-earned wisdom from years of experience, and many come simply to feel less alone. Together, parents trade tips, swap resources, and hold space for each other in the hardest moments.
Whether you’re waiting for your first genetics appointment or you’ve been navigating KCNA2 for years, you belong here. These groups are run by parents, supported by KCNA2 Epilepsy, Inc., and built on the belief that none of us should face this diagnosis in isolation.
Please join the group(s) that fit your needs. You’re not alone in your journey, our families are here to support you as you navigate all that lies ahead.
Still searching for something?
Let’s keep going. We see you. We’re with you. And we’re not giving up.
KCNA2 Epilepsy Foundation | A 501(c)(3) nonprofit organization
