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Resources

Having a diagnosis such as SCN8A can be overwhelming. There are many different things you or your child might need—such as seizure monitors, specialty equipment, communication devices, and more. We have compiled a list of many different resources to help you begin. If you are connecting with us for the first time, we encourage you to fill out the form through the link below to join our Facebook family support group.

The following list contains links to third-party websites. The Cute Syndrome Foundation is not responsible for the content or privacy policies of these external sites.

Awareness Days

February

Feb. 8th: International Epilepsy Day
Feb. 9th: SCN8A Awareness Day
Second week: Tube Feeding Awareness Week
Feb. 14–21st: Seizure Action Plan Awareness Week
Feb. 20th–26th: National Epilepsy Week (UK)
Feb. 28th: RARE Disease Day

March

Epilepsy Awareness Month (Canada)
Mar. 26th: Purple Day

May

May 16th–22nd: Global Tracheostomy Tube Awareness Week

October

Oct. 19th: SUDEP Action Day

November

National Epilepsy Awareness Month (USA)

December

Dec. 1st–7th: Infantile Spasms Awareness Week

Quick Links

Communication Devices

LAMP Words for Life Tobii Dynavox US PRC-Saltillo

Family Support

The Autism Community in Action Canadian Epilepsy Alliance Child Neurology Foundation Courageous Parents Network DEEP Connections Electric Love Retreats Epilepsy Alliance America Epilepsy Foundation Living Well With Epilepsy Pediatric Epilepsy Surgery Alliance Purple Peace 4 Epilepsy Raregivers

Feeding and Dietary Support

Functional Formularies Compleat Real Food Blends Charlie Foundation (Ketogenic Diet) Keto Hope Foundation

Grief Support

Bereaved Parents of the USA The Compassionate Friends COPE Foundation The Dougy Center Good Grief MISS Foundation SUDC Foundation

Grant Organizations

Chelsea Hutchison Foundation Chive Charities CICRF Massachusetts Danny Did Foundation The Daisy Garland (UK) Family Fund (UK) MBA Open Doors Newlife Charity UK NORD Variety Children Charity

Medical Flights

Mercy Medical Angels Miracle Flights SkyHope

Miscellaneous

The Arc Carers UK Easterseals

SCN8A Children's Books

Sweet Miss Stella by Amber Allen

The Universe Inside Kael by E.J. Embry

SCN8A Organizations

SCN8A Australia SCN8A Brasil SCN8A España SCN8A France SCN8A Germany SCN8A Italia SCN8A Nederland SCN8A Portugal SCN8A UK & Ireland International SCN8A Alliance Shay Emma Hammer Research Foundation

Seizure Dogs

4 Paws for Ability Domesti-Pups Little Angels Service Dogs

Seizure Monitors

Emfit SAMi Sleep Activity Monitor Smart Monitor

Specialty Equipment

Adaptations By Adrian Beds by George Binkeez for Comfort EEG to GO Firefly/Sunrise Medical Adaptive Equipment NillyNoggin EEG Cap Safe Place Bedding Sleep Safe Beds

Wish and Gift Organizations

The Dream Connection (East TN) Grant a Dream Make-a-Wish Icing Smiles Santa’s Little Hackers Feel Better Friends

Clinician Reference Guide

Discover clinical wisdom about SCN8A from physicians with experience treating this rare disorder.

Educational Videos

Explore educational videos featuring experts, families, and advocates sharing insights on SCN8A-related disorders, research, treatments, care, and navigating life with SCN8A.

Patient Assistance Grant

This grant offers financial assistance to patients with a confirmed SCN8A diagnosis for medical equipment, therapy devices, and educational aids not covered through insurance.

Checklists and Forms

Emergency Medical Form

Fill out this form and keep on hand to have all medical information readily available in case of emergency.

Transition to Adulthood

Transitioning to adulthood can be a challenging time for youth with SCN8A. The tools below can help support the transition in healthcare and education.

Child Neurologist New Visit Toolkit

Fill out the Child Neurology Foundation’s Child Neurologist New Visit Toolkit prior to your first visit with a neurologist.

Seizure Action Plan Checklist

Create a seizure action plan to share with caregivers and schools with tailored guidelines on how to respond to your child during a seizure.