Educational Videos
DSF offers a variety of educational webinars and videos to help families and professionals to navigate a diagnosis of Dravet syndrome.
DSF offers a variety of educational webinars and videos to help caregivers and families to navigate their loved one’s diagnosis of Dravet syndrome. These recordings provide remote learning opportunities with practical advice on diagnosis, clinical care, current research, caregiver challenges, and more. Find playlists on different topics ranging from treatment to best care practices to research, featuring videos from previous DSF educational events.
These videos highlight the latest guidelines in clinical care.
The development of this updated professional educational series by the Dravet Syndrome Foundation was prompted by the recent publication of the International Treatment Consensus on Diagnosis and Management of Dravet Syndrome.
This video series is made possible thanks to educational grants from: Biocodex USA, Jazz Pharmaceuticals, Takeda, and UCB.Â
Dravet Syndrome Diagnostic Testing
Dravet Syndrome Clinical Presentation
Comorbidities of Dravet Syndrome
Seizure Triggers & Vaccinations in Dravet Syndrome
Maintenance Treatment for Dravet Syndrome
Cognition & Autism Spectrum Disorder in Dravet Syndrome
Dravet Syndrome Rescue Medication and Seizure Action Plans
SUDEP in Dravet Syndrome
Disease Modifying Therapies in Dravet Syndrome
Transition of Care from Childhood to Adulthood in Dravet Syndrome
Presentation and Management of Adults with Dravet Syndrome
DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome.
Caregiver's Guide to Thriving
Sources of Distress: Turning Insights into Advocacy
Centering the Good: Finding your voice (and confidence) as the good parent you are!
A conversation with Dads, for Dads
Minfulness Movement Meditation
DSF’s 5th Biennial Conference took place on June 23-25, 2022, in collaboration with Cook Children’s Medical Center, at The Worthington Renaissance, Fort Worth, Texas.
This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals.
Dravet Syndrome Science Primer
Industry Update: Stoke Therapeutics
Industry Update: Longboard Pharmaceuticals
Industry Update: Epygenix Therapeutics
Industry Update: Takeda
Industry Update: Encoded Therapeutics
Industry Update: CAMP4 Therapeutics
Industry Update: UCB
Dravet 101 for Providers and Parents
Treatment of Dravet Syndrome
Seizure Action Plans and Rescue Medications
Genetics of Dravet Syndrome
Sessions for Families New to Diagnosis
These sessions will be helpful for families who are new to the diagnosis of Dravet syndrome. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your child’s care. Sessions are presented by community experts – including other parents.
Dravet Syndrome: A Whole Family Diagnosis
Epilepsy Disorders & Dravet Syndrome
Beginner's Guide to Dravet Syndrome
Defining Dravet Syndrome
Introduction to Dravet Syndrome – Day of Dravet 2020
Videos for Caregivers
Brain-First Parenting for Dravet Syndrome – Session 1 of 3
Brain-First Parenting for Dravet Syndrome – Session 2 of 3
Brain-First Parenting for Dravet Syndrome – Session 3 of 3
Dravet Syndrome: A Whole Family Diagnosis
Epilepsy Disorders & Dravet Syndrome
Beginner's Guide to Dravet Syndrome
Defining Dravet Syndrome
Introduction to Dravet Syndrome – Day of Dravet 2020
Puberty in Girls with Dravet Syndrome – Lourdes Falcon, MD
Gait & Dravet Syndrome
Recognition and Intervention of Autism Spectrum Disorder in Dravet – Roberto Tuchman, MD, FAAP, FAAN
Gait in Dravet Syndrome – Ingrid Scheffer, FAA, FAHMS
Genetics & Gene Therapy
One-time Gene Therapy for Dravet Syndrome: Technology Presentation and Update on Clinical Plans
AAV-mediated Gene Therapy for Developmental and Epileptic Encephalopathies – Part 2
Gene Therapies in Dravet Syndrome
How Can Sodium Channel SCN8A Contribute to the Treatment of Dravet Syndrome?
Genetics of Dravet Syndrome
The Basics on DNA, RNA and Proteins: What You Need to Know About the Genetics of Dravet Syndrome
Genetics in Dravet Syndrome: It's Not that Simple! 2020 Day of Dravet
AAV-mediated Gene Therapy for Developmental and Epileptic Encephalopathies – Part 3
AAV-mediated Gene Therapy for Developmental and Epileptic Encephalopathies – Part 1
Treatments for Dravet
Nayzilam patient overview video (created by UCB)
The REAL Ketogenic Diet: Tales from 5478 Keto Meals
Medical Ketogenic Diet in the Treatment of Dravet Syndrome
Creative Meal Planning in the Ketogenic Diet – Cristina Visona, MS, RD, LD/N, CSP
Telemedicine: Perspectives from Professionals and Patients
The Science of Cannabis and Dravet Syndrome
Discovery and development of new therapies using zebrafish
Non Convulsive Status Epilepticus in Dravet Syndrome
Dancing to a Different Tune: TANGO Gives Hope for Dravet Syndrome
What's New in Dravet Syndrome Treatment?
Introduction to Pharmacology
Neuromodulation in Dravet Syndrome – Eric Segal, MD
Research & Registries
Natural History Study Results and Gait Study Plans
Patient Centered Outcomes Research in Dravet Syndrome
The Science of Cannabis and Dravet Syndrome
Discovery and development of new therapies using zebrafish
Basic Science of Dravet Syndrome: Towards Future Therapies and Cure
Natural History of Dravet Syndrome
Role of Neuroinflammation in Dravet Syndrome
Patient Centered Outcomes Research & the Patient Voice
SCN1A Data Science – Challenges and Opportunities
Human Stem Cell Models of Epilepsy
Modeling Dravet Syndrome in a Mouse Model
Metabolic Dysfunction in a Zebrafish Model of Dravet Syndrome
Sessions for Families with Adult Patients
These sessions will be helpful for families who have a teen or adult patient with the diagnosis of Dravet syndrome. Learn about topics surrounding transition and future planning. Sessions are presented by community experts – including other parents.
Transition to Adult Care for Patients with Dravet Syndrome
Daily Life After Transition to Adulthood for Patients with Dravet Syndrome
Clinical Trials & Adult Patients with Dravet Syndrome
Preparing for Adulthood in Dravet Syndrome
Pediatric Transition to Adult Care in Dravet Syndrome
Dravet syndrome in Adult Patients
Transitioning from Pediatric to Adult Care
Natural History of Adults with Dravet with Dr. Andrade
Dravet Syndrome in Adults
Dravet Syndrome and Social Security Benefits
Creating a Special Needs Legal and Life Care Plan
Transition to Adult Care in Dravet Syndrome – Results of a Caregiver Survey
Brain-First Parenting Workshop
This 9-hour workshop is led by Eileen Devine, LCSW, a neurobehavioral support coach for parents. Eileen Devine is a therapist, neurobehavioral consultant, and mother to a child with a neurobehavioral disability that has challenging behavioral symptoms. She has her License in Clinical Social Work and is a certified facilitator in the teaching and application of the neurobehavioral model, as developed by FASCETS founder, Diane Malbin. She has also completed Tier 1 training in Think:Kids Collaborative Problem Solving. Eileen is an instructor for the Post-Master’s Certificate in Adoption and Foster Therapy through Portland State University’s Child Welfare Partnership, training other therapist on the neurobehavioral model. Special thanks to the Dravet syndrome caregivers who so openly and honestly shared their challenges in this webinar series.
Accompanying session materials can be found here.
Brain-First Parenting for Dravet Syndrome – Session 3 of 3
Brain-First Parenting for Dravet Syndrome – Session 2 of 3
Brain-First Parenting for Dravet Syndrome – Session 1 of 3
Comorbidities
Puberty in Girls with Dravet Syndrome – Lourdes Falcon, MD
Gait & Dravet Syndrome
Recognition and Intervention of Autism Spectrum Disorder in Dravet – Roberto Tuchman, MD, FAAP, FAAN
Gait in Dravet Syndrome – Ingrid Scheffer, FAA, FAHMS
Sleep, Cognition, and Behavior in Dravet Syndrome
Natural History Study Results and Gait Study Plans
Sleep, Cognitive & Non-Seizure Disorders in Dravet Syndrome – Dravet Syndrome Foundation
Dravet Stories
Seth's Story – Living with Dravet Syndrome – #cureDravet
Dravet Dad Interview – Stephen and Zora
Dravet Mom Interview with Mandee
Dravet Mom Interview with Jenny
Dravet Mom Interview with Morgan
A Day In The Life with Dravet Syndrome
Anna's Story – Living with Dravet Syndrome
Living with Dravet Syndrome – Charlotte's Story – #cureDravet
Anna's Story – 2021 Dance for Dravet
DSF City Bash – Morgan's Story
2016 Double Down for Dravet – Elissa's Story
Watson Family Story – Dance Away Dravet
Clinical Trials
Clinical Trial Experience and the Importance of Patient Participation
Clinical Trials & Adult Patients with Dravet Syndrome
One-time Gene Therapy for Dravet Syndrome: Technology Presentation and Update on Clinical Plans
AAV-mediated Gene Therapy for Developmental and Epileptic Encephalopathies – Part 2
Designing Better Clinical Trials – Measuring More Than Seizures
Dravet Syndrome Clinical Trial Update (June 2021)
Sudep & Tissue Donation
SUDEP in Dravet Syndrome
SUDEP in SCN1A Disease
Sudden Unexpected Death in Epilepsy (SUDEP): Are Patients with Dravet Syndrome at Risk?
Conferences
Featured videos from past DSF conferences, presented by top clinicians and researchers on relevant topics for the Dravet syndrome community.Â
Epilepsy Disorders & Dravet Syndrome
Beginner's Guide to Dravet Syndrome
Puberty in Girls with Dravet Syndrome – Lourdes Falcon, MD
Gait & Dravet Syndrome
Recognition and Intervention of Autism Spectrum Disorder in Dravet – Roberto Tuchman, MD, FAAP, FAAN
Gait in Dravet Syndrome – Ingrid Scheffer, FAA, FAHMS
Sleep, Cognition, and Behavior in Dravet Syndrome
SUDEP in Dravet Syndrome
SUDEP in SCN1A Disease
Sudden Unexpected Death in Epilepsy (SUDEP): Are Patients with Dravet Syndrome at Risk?
Transition to Adult Care for Patients with Dravet Syndrome
Pediatric Transition to Adult Care in Dravet Syndrome
Fundraisers & Events
2018 DSF Wings of Hope
2018 Ciara's Spirit of Hope Award Ceremony
Anna's Story – 2021 Dance for Dravet
DSF City Bash – Morgan's Story
2016 Double Down for Dravet – Elissa's Story
Remembrance Day 2021
Watson Family Story – Dance Away Dravet
ThankYou from Double Down for Dravet 2024
Eden Bankston's story
Programs & Resources
Brain-First Parenting for Dravet Syndrome – Session 1 of 3
Brain-First Parenting for Dravet Syndrome – Session 2 of 3
Brain-First Parenting for Dravet Syndrome – Session 3 of 3
Dravet Syndrome and Social Security Benefits
Creating a Special Needs Legal and Life Care Plan
Creative Meal Planning in the Ketogenic Diet – Cristina Visona, MS, RD, LD/N, CSP
VIP Sibling Kits and Parent Resources
Telemedicine: Perspectives from Professionals and Patients
Dravet syndrome diagnosis? Connect with the Dravet Syndrome Foundation for information and support.
Developing Your Child's IEP: Rights & Roadblocks
Marriage & Relationships with a Special Needs Child
Behavioral Strategies
The Role of Neuropsychological Assessment in Caring for Children with Dravet Syndrome
Neuropsych Evaluations for Children with Dravet syndrome – Brandon M. Korman, Psy D, ABPP-CN
Diagnosis, Treatment, Family Issues/Needs and Support
This free 6-part video education series provides an in-depth exploration of the impact Dravet syndrome can have on patients and their families while covering topics like diagnosis, treatment, family needs, support and more. Dr. Elizabeth Thiele, Professor of Neurology at Harvard Medical School and Director of the Pediatric Epilepsy Program at Massachusetts General Hospital leads a discussion with an expert speaker panel that includes a nurse, caregivers and a research coordinator.
Specific topics to be addressed include:
- Raising Awareness: A Guide to Signs and Symptoms in the Early Years of Life
- Diagnosis Received: What’s Next? – Being Prepared to Provide Support
- Family Matters: Demands on the Immediate Family and Relatives
- Effective Therapy: What Are My Child’s Options Now and in The Future?
- Dravet in Transition: What Happens When A Child is Ready for Adult Care?
- Managing Caregiver Burden: Balancing Needs and Accessing Support Resources
To view this video series, click here. Then simply add your name and email, click ‘Watch Now’ below, then play the video. You will be brought to a page with a few short multiple-choice questions. Provide your responses and click ‘Submit’ when you’re ready to view. To download the slides that accompany the video, click on ‘Event Resources’ below the video player after you’ve signed in.