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SCN8A 101
Learn the basics of brain communication, sodium channels, and how SCN8A-related disorders can affect sodium channel function.
2025 SCN8A Clinician, Researcher, and Family Gathering
TCSF's 11th Annual SCN8A Gathering on December 5, 2025, in Atlanta, GA.
Seizure Types Made Simple
Dr. Daniel Lowenstein explains seizure types to help caregivers better understand and describe seizures. Warning: This webinar includes videos of seizures.
Advancing SCN8A Research: Opportunities for Family Participation
Learn how family participation can help drive discovery.
Movement Disorders in SCN8A
An overview of movement disorders and how they can affect coordination and mobility.
De Novo vs. Inherited and the Risk of Recurrence
Learn how SCN8A variants can occur and what they may mean for recurrence in families.
Using ASOs to Treat SCN8A
Learn about the potential and challenges of antisense oligonucleotides (ASOs) as a treatment for SCN8A-related disorders.
Difficult Behaviors, Family Stress, and Strategies to Support Well-Being
Learn practical tools for managing everyday challenges, strengthening family relationships, and creating a more supportive environment.
Understanding Gene Therapy and How it Pertains to SCN8A
From 2021: A basic introduction to gene therapy and how it may apply to future treatments for SCN8A-related disorders.
2025 International SCN8A Awareness Day
This year's awareness day theme is 2 simple words: I am.
Clinical Trials 101
A discussion designed to give caregivers and patients a basic understanding of clinical trials.
The Cute Syndrome Foundation Town Hall
Hillary Savoie, Danielle Hayward, and Kacie Craig share updates from across the SCN8A community, highlights from our recent FDA patient-led listening session, and information about foundation programs and what's ahead in 2026.
Understanding Loss and Grief in SCN8A
Anticipatory grief, grief after loss, the importance of self-care, and the ongoing support programs that TCSF offers for SCN8A families.
How Your Medical Records Can Help Support an SCN8A Clinical Trial
Ciitizen helps enable research and securely pulls the entire electronic medical history of patients using data from medical records.
The Ins and Outs of SCN8A and Feeding Tubes
Tips, stories, and experiences about feeding tubes to help support those of us with tubes in our lives already as well as those who might be considering them down the line.
Long-term Financial Planning
A financial advisor guides us on special needs finances including life insurance, special needs trusts, and ABLE accounts.
Vehicle and Home Modifications
SCN8A caregivers share how they figured out what would work best for their child, how they got it funded, and what they want the rest of us to know.
Caregiver Self Preservation
Practical guidance, tips and tricks for caregivers from a physical therapist to keep yourself healthy and safe during transfers.
How Do You Do it?: Traveling Tips and Tricks
Practical travel tips from SCN8A caregivers and a representative from TSA Cares.
2024 SCN8A Clinician, Researcher, and Family Gathering
The Cute Syndrome Foundation's 10th Annual SCN8A Gathering on December 6, 2024, in Los Angeles, CA.
How Families Can Help Beyond Clinical Trials
How families can engage and advocate to advance research and drug development.
A Meeting with an FDA Representative
A family-friendly overview of the FDA drug approval process.
SCN8A International Advocacy Efforts
Updates from the leaders of SCN8A Italia and SCN8A European Federation (2021).
SCN8A and Potential Future Treatments 101
Discussion of the treatment development landscape for SCN8A (2021).
2020 Pre-Gathering Poster Session #2
The Patel Lab presents research publications in advance of the 2019 Annual Gathering.
2020 Pre-Gathering Poster Discussion #2 Part 2
Discussion on mechanisms of breathing dysfunction during seizures.
2020 Pre-Gathering Poster Session #1
The Danish Epilepsy Centre presents their findings from their SCN8A patient registry.
Setbacks and Failures in Drug Development
Learn what challenges can occur during drug development and what they can mean for families.
A Conversation About Patient Data
Discussion on ethics of patient data collection.
2021 Annual SCN8A Clinician, Researcher, and Family Gathering
Adventures in AAC: Presuming Competence in Communication
A discussion on Augmentative and Alternative Communication with Hillary Savoie and Kacie Craig.
2019 Gathering: Professional Lunch
Working lunch discussion of 2019 SCN8A researchers and industry partners.
2019 Gathering: Difficult Discussions—Caregiver Stress
Difficult decisions and caregiver stress presented by Tracy Salazar, PhD of the Lennox-Gastout Syndrome Foundation.
2019 SCN8A 101
SCN8A 101 presented by Dr. Eric Wengert at the 2019 SCN8A Clinician, Researcher, and Family Gathering.
Mapping Your Overwhelm Cycle
Learn to recognize your personal overwhelm cycle and develop practical tools for navigating it.
Anxiety Management Tools
Learn practical, real-life strategies for managing anxiety while caring for a medically complex child.
Building Your Support Team
Explore practical tools and resources to surround yourself with supportive community.
Grief as a Gateway to Joy
Explore how grief can create pathways toward joy, connection, and meaning for caregivers.
Sustainable Self Care
Practical approaches to self-care that can help caregivers manage chronic stress, prevent burnout, and support their well-being.
Educational Advocacy 1.0
Special education info: IEPs, rights, school accommodations, IDEA and Section 504
SUDEP and Seizure Detection
Sudden Unexplained Death in Epilepsy (SUDEP), seizure detection and alerting devices, and resources that help families access these important safety tools.
Partnering for Progress: TCSF + Citizen Health in Action
Learn how Citizen is transforming health records into research insights, and offering new tools to help advance SCN8A research.
The Evolution of a Special Needs Parent
Kara Ryska, host of The Special Needs Mom Podcast, shares practical strategies for navigating the emotional and mental load of caregiving.
Delineating the Phenotypic Landscape of SCN8A
Explore the wide range of symptoms and clinical features associated with SCN8A-related disorders.
Understanding the Praxis EMBOLD Study Phases
About the Praxis Precision Medicines EMBOLD Study clinical trial.
Advance Care Planning
Advance care planning, decision-making frameworks, and practical resources can help prepare you for difficult possibilities.
What is Palliative Care, Really?
Learn what palliative, hospice, and concurrent care really mean, and how these services support care goals and quality of life.
Decisions, Decisions, and More Decisions
Understanding how you make decisions and how your child’s providers support you can reduce overwhelm and regret.
How We Learned to Make Medical Decisions in a Crisis
Crisis decision making, including questions caregivers might want to ask and the tools that they might have at their disposal.
2024 SCN8A Awareness Day Theme Reveal
The 2024 International SCN8A Awareness Day theme introduced by Dianely Cabrera.
Tate’s Story
The story of SCN8A Warrior Tate.
2020 Virtual Gathering: Welcome
Welcome from TCSF leadership and SCN8A warriors.
2020 Virtual Gathering: Clinician Roundtable
Discussion and presentations from leading SCN8A clinicians and biotech.
2020 Virtual Gathering: Researcher Roundtable
Presentations and discussion amongst leading SCN8A researchers.
Utilizing Augmentative and Alternative Communication
Learn from other SCN8A caregivers about eyegaze devices, tablets, picture cards, and all kinds of other tools.
LifeCourse Workshop
Organize your ideas, vision, and goals, as well as problem-solve, navigate, and advocate for the support your family needs, now and in the future.
Cheers to a Good Life—Workshop Series: Part 1
Workshop Series led by Heather Crowley in partnership with Missouri Family to Family. Part 1 discusses summer/self-care and the integrated supports star principle and tool.
Cheers to a Good Life–Workshop Series: Part 2
Workshop Series led by Heather Crowley in partnership with Missouri Family to Family. Part 2 discusses a trajectory for post-secondary planning or IEPs.
Connor James Smith Patient Assistance Grant Reveal
This new program offers SCN8A patients direct financial support for needs and joys not covered by insurance.
Restoration Roadmap
Forget Recovering the Old You, Let’s Take a Look at Restoration – with Kara Ryska of the Special Needs Moms Podcast.
Perspectives on Achieving Meaningful Change
A Roundtable Discussion with Clinicians, Researchers, Caregivers, and Industry.
2024 International SCN8A Awareness Day
International SCN8A Awareness Day 2024: If You Only Knew
2023 International SCN8A Awareness Day
2023 International SCN8A Awareness Day Video: Celebrate Today
2022 SCN8A Clinician, Researcher, and Family Gathering
The Cute Syndrome Foundation's 8th Annual CRF Gathering on December 2nd, 2022 in Nashville, TN.
Patient-Focused Drug Development: Methods to Identify What Is Important to Patients
FDA guidance for Patient Focused Drug Development (PFDD) read by various patients, advocates and caregivers.
2022 International SCN8A Awareness Day
February 9th we celebrate International SCN8A Awareness Day. Come hear #OurCuteStory
2021 International SCN8A Awareness Day
Check out our Awareness Day video celebrating the fact that no matter what the numbers say, we drive on together #AgainstAllOdds.
2020 International SCN8A Awareness Day
#StrongerTogether: We have learned that we cannot do this alone. The more connections we make, the stronger our community becomes.
2019 International SCN8A Awareness Day
This SCN8A Awareness Day, we want you to know about the very special people who help us CHOOSE HOPE everyday: Our Children.
2018 International SCN8A Awareness Day
No matter how many times we get knocked down, we KEEP MOVING FORWARD!
2017 International SCN8A Awareness Day
Help us celebrate the first International SCN8A Awareness Day on February 9th, 2017 by spreading the word about SCN8A Epilepsy!
2023 SCN8A Clinician, Researcher, and Family Gathering
The Cute Syndrome Foundation's 9th Annual CRF Gathering on December 1st, 2023, in Orlando, FL.
Industry Panel: 2024 SCN8A Annual Gathering
2024 SCN8A Gathering Industry Panel with Neurocrine Biosciences and Praxis Precision Medicines.
Co-Creating a Relationship of Care
Hosted by Heather Bentley, this session explores strong provider–patient–caregiver partnerships, with practical tips for improving communication, navigating adult care, and building lasting healthcare relationships.