Resources

Supporting families impacted by KCNQ2-related disorders through information, connection, and hope.

Newly Diagnoised

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.

Available Resources

KCNQ2 Educational Materials

Handbooks and Brochures

Educational Videos

Glossaries

Caregiver Support Resources

KCNQ2 Cure Support Programs

Care Resources

Caring for the Caregiver

Federal & State Resources

Sibling Resources

Grief

Wind and Willow - CNF Grief Community - Willow and Wind is a grief community supported by the Child Neurology Foundation. For families who have lost a child or are carrying anticipatory grief tied to milestones that changed or never came, grief can be deep and complex. Willow and Wind offers courses, a podcast, and a community.

DEEp-Connections Sibling Kits (4-10) and (11-18) - The DEE-P Connections website offers a request form for Parent and Sibling Kits, designed to support families with a child diagnosed with a rare epilepsy. These kits provide resources and materials tailored for parents and siblings to help them understand and manage the challenges associated with rare epilepsies. Families are encouraged to join the DEE-P Family Community to access these kits. Currently, the program is available to U.S. residents, and many kit contents are also available for download online.

Sandy Feet Initiative - Sandy Feet Initiative is a nonprofit organization that recognizes, supports, and creates a community for the siblings of children with special needs, disabilities, and chronic illnesses. They offer beach-based programs, including weeklong and after-school camps, where siblings can learn, have fun, and connect with others who share similar experiences. Activities include yoga, surfing, boogie boarding, beach clean-up, and open discussions about their shared experiences.
Sibling Support Project - The Sibling Support Project is a national program dedicated to addressing the lifelong concerns of siblings of individuals with developmental, health, and mental health challenges. It is renowned for initiating Sibshops—engaging peer support groups designed for school-age siblings of children with special needs. The project offers training, resources, and support to communities aiming to implement these programs, fostering a network that acknowledges and supports the unique experiences of these siblings.

Courses & learning

Caregiver's Compass — a free, four-week virtual course where parents and caregivers come together to learn practical strategies for managing stress, strengthening communication, and supporting mental well-being. Each live session is guided by a licensed therapist in a supportive, community-centered space.
CNF Learning Portal — Child Neurology Foundation
Education & Transition Course — Advocacy University, sponsored by UCB

Medical Resources

Creating a Care Team

Community Resources

Seizure Learning & Training

Seizure & Epilepsy Resources

Infantile Spasms

School Resources

School Resources for Children with Complex Health Needs

IEPs Before You Start – Make Your Resource Binder

IEPs (Individual Educational Plans)

504 Plans

Epilepsy in School

Cerebral/Cortical Visual Impairment (CVI)

Research Resources

KCNQ2 Research Resources

Patient Advocacy

Travel Resources

Medical Transportation

Traveling with Medically-Fragile Children

Packing

Financial Resources

Quick links

Research Resources

Provider Resources

Do you have a science or research-related question you’d like answered?

We are not healthcare professionals and cannot provide medical advice. Please consult a clinician for any treatment-related questions.

Ask a question

Resources

Newly Diagnoised

Available Resources

KCNQ2 Educational Materials

Caregiver Support Resources

Medical Resources

School Resources

Research Resources

Patient Advocacy

Travel Resources

Financial Resources

Quick links

KCNQ2 Cure Alliance

Newsletter sign up

About You