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.
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: CAMP4 Therapeutics
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
Videos for Caregivers
Dravet Syndrome: A Whole Family Diagnosis
Puberty in Girls with Dravet Syndrome – Lourdes Falcon, MD
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
How Can Sodium Channel SCN8A Contribute to the Treatment 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
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
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
Research & Registries
Discovery and development of new therapies using zebrafish
Basic Science of Dravet Syndrome: Towards Future Therapies and Cure
Patient Centered Outcomes Research & the Patient Voice
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
Preparing for Adulthood in Dravet Syndrome
Pediatric Transition to Adult Care in Dravet Syndrome
Transitioning from Pediatric to Adult Care
Natural History of Adults with Dravet with Dr. Andrade
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.
Comorbidities
Puberty in Girls with Dravet Syndrome – Lourdes Falcon, MD
Recognition and Intervention of Autism Spectrum Disorder in Dravet – Roberto Tuchman, MD, FAAP, FAAN
Gait in Dravet Syndrome – Ingrid Scheffer, FAA, FAHMS
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
A Day In The Life with Dravet Syndrome
Anna's Story – Living with Dravet Syndrome
Living with Dravet Syndrome – Charlotte's Story – #cureDravet
2016 Double Down for Dravet – Elissa's Story
Clinical Trials
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
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.
Puberty in Girls with Dravet Syndrome – Lourdes Falcon, MD
Recognition and Intervention of Autism Spectrum Disorder in Dravet – Roberto Tuchman, MD, FAAP, FAAN
Gait in Dravet Syndrome – Ingrid Scheffer, FAA, FAHMS
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
2016 Double Down for Dravet – Elissa's Story
Programs & Resources
Creative Meal Planning in the Ketogenic Diet – Cristina Visona, MS, RD, LD/N, CSP
Telemedicine: Perspectives from Professionals and Patients
Dravet syndrome diagnosis? Connect with the Dravet Syndrome Foundation for information and support.
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.
