You are not alone
Resources
Supporting families impacted by KCNQ2-related disorders through information, connection, and hope.
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KCNQ2 Educational Materials
Back to topHandbooks and brochures
- KCNQ2 Parent and Caregiver Handbook PDF · KCNQ2 Cure
- Family brochure PDF · KCNQ2 Cure
- Cambridge Elements: KCNQ2- and KCNQ3-associated epilepsy Cambridge University Press
Glossaries
- Gene therapy terms ASGCT
- Drug development terms ASGCT
- Clinical trial terms FDA
- Commonly used genetic terms Cleveland Clinic
- Talking Glossary of Genomic and Genetic Terms NHGRI
Educational videos
- KCNQ2 Cure YouTube channel Summit talks and webinars
Caregiver Support
Back to topKCNQ2 Cure support programs
- Newly Diagnosed KCNQ2 Cure
- KCNQ2 Global Support Facebook Group KCNQ2 Cure
Care and caring for the caregiver
- Respite care notebook (fillable PDF) Child Neurology Foundation
- Respite care resources Child Neurology Foundation
Courses and learning
- Caregiver's Compass Free 4-week virtual course led by a licensed therapist
- CNF Learning Portal Child Neurology Foundation
- Education and Transition course Advocacy University, sponsored by UCB
Federal and state resources
- Medicaid waivers by state Medicaid.gov
- Title V CSHCN directors by state HRSA
- Title V state profiles AMCHP
KCNQ2 Cure support programs
- Newly Diagnosed KCNQ2 Cure
- KCNQ2 Global Support Facebook Group KCNQ2 Cure
Siblings
- What About My Other Kids? Video
- DEE-P Connections sibling kits (ages 4–10 and 11–18) DEE-P Connections · U.S. residents
- Sandy Feet Initiative Beach-based camps for siblings
- Sibling Support Project Sibshops peer support groups
Medical Resources
Back to topCreating a care team
- Find a doctor KCNQ2 Cure
- Child neurologist new visit toolkit Child Neurology Foundation
Community resources
- Community resource database Children's Hospital of Philadelphia
- Tools and resources Child Neurology Foundation
Seizure learning and training
- The Epilepsy Learning Portal Epilepsy Foundation
- Seizure first aid training and certification Epilepsy Foundation
- Seizure first aid with member organizations Epilepsy Alliance America
- Seizure safety videos Epilepsy Foundation
Seizure and epilepsy resources
- Seizure preparedness and safety Epilepsy Foundation
- 24/7 emergency helpline Epilepsy Foundation
- Seizure action plan templates Epilepsy Foundation
- Seizure action plan Epilepsy Alliance America
- Downloadable seizure forms Epilepsy Foundation
Infantile spasms
- Infantile spasms Child Neurology Foundation
- Infantile Spasms Community discussion group Facebook
School Resources
Back to topChildren with complex health needs
- Back to school Child Neurology Foundation
IEPs (Individualized Education Plans)
- Understanding IEPs Understood
- IEP and 504 plan videos YouTube
- How to prepare for an IEP meeting (checklist) A Day in Our Shoes
- How to organize your child's IEP binder Understood
Before you start: make your IEP resource binder
- Individuals with Disabilities Education Act U.S. Code
- U.S. Code of Federal Regulations GovInfo
- Your state's education act and regulations 50-state survey
- Model form of prior written notice U.S. Dept. of Education
- Federal guidance on procedural safeguards U.S. Dept. of Education
- Special education law in each of the 50 states Special Mom Advocate
- Special Education Law (book) Wrightslaw
Before you start: make your IEP resource binder
- Individuals with Disabilities Education Act U.S. Code
- U.S. Code of Federal Regulations GovInfo
- Your state's education act and regulations 50-state survey
- Model form of prior written notice U.S. Dept. of Education
- Federal guidance on procedural safeguards U.S. Dept. of Education
- Special education law in each of the 50 states Special Mom Advocate
- Special Education Law (book) Wrightslaw
504 plans
- Section 504 protections for students with epilepsy U.S. Dept. of Education
- Model 504 plan for a student with epilepsy Epilepsy Foundation
- School supports and IEP/504 accommodations for autism Undivided
- Special education advocacy Wrightslaw
Cerebral/cortical visual impairment (CVI)
- CVI Now IEP guide Perkins School for the Blind
Research
- How to participate in research KCNQ2 Cure
- Clinical trial opportunities KCNQ2 Cure
- The power of a CRID for every KCNQ2 family KCNQ2 Cure
- Citizen Health natural history study KCNQ2 Cure + Citizen Health
- KCNQ2 Biorepository KCNQ2 Cure
Patient Advocacy
- When you and your child's clinicians have different ideas or styles Courageous Parents Network
Travel
- Medical travel assistance list CHOP
- TSA Cares program TSA
- Hidden Disabilities Sunflower program Sunflower
- Best packing list Google Sheet
Financial
Bereavement
Back to topLosing a child, or carrying grief for milestones that changed or never came, can leave you feeling lost. We hope these resources help you and your family navigate this difficult journey.
- Willow and Wind grief community Child Neurology Foundation · courses, podcast and community for loss or anticipatory grief
Share your knowledge
Do you have a resource you feel would be helpful for our KCNQ2 community?
Send us an email with your resource at info@kcnq2cure.org and we will review and add to our list.