Dravet Syndrome Foundation
Dravet Syndrome Foundation
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2024 Ciara's Spirit of Hope Award
Learn more about Ciara's Spirit of Hope Award that is presented at the biennial Dravet Syndrome Foundation Family & Professional Conference. The next award presentation will be on Saturday, June 22, 2024 in Bloomington, Minnesota.
Переглядів: 137

Відео

2023 DSF Educational Webinar Series - Medicaid and Waiver Programs
Переглядів 879 місяців тому
Join us for a workshop on Medicaid, led by Amy Aikins, Director of Patient Access at Little Hercules Foundation, on Monday, November 27th at 4pm ET.
2023 DSF Caregiver Educational Webinar - Health Insurance Basics
Переглядів 4810 місяців тому
Jennifer is a registered nurse with years of experience working as a Utilization Review Specialist in the insurance industry. She has experience with Medicare, self-insured/employer health plans, and commercial plans, with a focus on appeals and prior authorizations. She has worked with Rare disease advocacy organizations helping to educate their communities about insurance and access issues. A...
2023 Day of Dravet workshops: Overview of Dravet Syndrome and Research Progress
Переглядів 33010 місяців тому
DSF Scientific Director, Dr. Veronica Hood, gives an overview of Dravet syndrome and current research update.
Anna's Story - 2023 Dance for Dravet
Переглядів 1 тис.10 місяців тому
The Odlaug Family share an update on their daughter's struggles with Dravet syndrome through this video shared at the 5th annual Dance for Dravet event in St. Louis, MO. You can learn more about Dravet syndrome and the Dravet syndrome Foundation at www.dravetfoundation.org.
Watson Family Story - Dance Away Dravet
Переглядів 62211 місяців тому
On Saturday, September 16th the Watson family from Jamison, PA hosted Dance Away Dravet and raised over $179,000 to aid in the mission of DSF. Here is their story of Emma's life and her struggle with all that Dravet syndrome brings.
Living with Dravet syndrome - Noah's Story
Переглядів 795Рік тому
Noah's parents share his diagnosis and journey with Dravet syndrome.
Living with Dravet syndrome - Dillon's Story
Переглядів 2,2 тис.Рік тому
Dillon's parents share his diagnosis and journey with Dravet syndrome.
Being Person-Centered: A Workshop for Dravet Families
Переглядів 85Рік тому
As part of the 2023 DSF Caregiver Educational Video Series, learn about being Person-Centered from Cheryl Ryan Chan, whose work brings heightened awareness and wisdom to the challenges that people with disabilities. The slide deck from the presentation can be found below.
Inspiration & Preparation for Traveling with Dravet
Переглядів 183Рік тому
As part of the 2023 DSF Caregiver Educational Video Series, learn about Special Education considerations for the Dravet syndrome student from DSF Family Liaison, Erin Reoyo, and our patient family panelists. The slide deck from the presentation and additional resources can be found below. General slide deck: drive.google.com/file/d/1_0ggDfzRmHkOiFpdqge_kNw6AGU8Ixdl/view?usp=sharing Additional r...
2023 Strike Out Dravet
Переглядів 320Рік тому
The 2023 Boston gala video for Strike Out Dravet, held on May 11th, benefitting the Dravet Syndrome Foundation.
DSF Media Roundtable - April 23, 2023
Переглядів 178Рік тому
A year after the release of our Voice of the Patient report (developed from our externally-led Patient Focused Drug Development meeting in Feb 2022), DSF offers an update to journalists on unmet needs in the community.
Let's Talk Special Education: Considerations for the Dravet Student
Переглядів 201Рік тому
As part of the 2023 DSF Caregiver Educational Video Series, learn about Special Education considerations for the Dravet syndrome student from DSF Family Liaison, Erin Reoyo, and our patient family panelists. Associated slide decks can be found at the links below. Nicole's presentation: docs.google.com/presentation/d/1JS6p6k7nScfrWdWxCqKFrE_O63crdqNNGr4uZvmm91o/edit?usp=sharing General slide dec...
Caregiver Connect: Meet the Families - Jenny Gallo & Dennis Sanderson
Переглядів 74Рік тому
Caregiver Connect: Meet the Families - Jenny Gallo & Dennis Sanderson To view additional caregiver connect videos visit: dravetfoundation.org/caregiver-resources/caregiver-connect/
Caregiver Connect: Meet the Families - Hunton Family
Переглядів 352Рік тому
Caregiver Connect: Meet the Families - Hunton Family To view additional caregiver connect videos visit: dravetfoundation.org/caregiver-resources/caregiver-connect/
Caregiver Connect: Meet the Families - Lauren Forker
Переглядів 215Рік тому
Caregiver Connect: Meet the Families - Lauren Forker
Caregiver Connect: Meet the Families - Maryanne Houser
Переглядів 77Рік тому
Caregiver Connect: Meet the Families - Maryanne Houser
Caregiver Connect: Meet the Families - Beth Fullam
Переглядів 124Рік тому
Caregiver Connect: Meet the Families - Beth Fullam
Caregiver Connect: Meet the Families - Michaels Family
Переглядів 95Рік тому
Caregiver Connect: Meet the Families - Michaels Family
Caregiver Connect: Meet the Families - Shapiro Family
Переглядів 150Рік тому
Caregiver Connect: Meet the Families - Shapiro Family
Caregiver Connect: Meet the Families - Shawnee Walker
Переглядів 57Рік тому
Caregiver Connect: Meet the Families - Shawnee Walker
Caregiver Connect: Meet the Families - Tyler Page
Переглядів 70Рік тому
Caregiver Connect: Meet the Families - Tyler Page
Caregiver Connect 1-1: Finding Your Support System
Переглядів 103Рік тому
Caregiver Connect 1-1: Finding Your Support System
Caregiver Connect 1-2: Practice Self Care
Переглядів 52Рік тому
Caregiver Connect 1-2: Practice Self Care
Caregiver Connect 1-3: Controlling Your Frustration
Переглядів 82Рік тому
Caregiver Connect 1-3: Controlling Your Frustration
Caregiver Connect 2-1: Chronic Traumatic Stress - PTSD
Переглядів 79Рік тому
Caregiver Connect 2-1: Chronic Traumatic Stress - PTSD
Caregiver Connect 2-2: Don't Take it Personally
Переглядів 29Рік тому
Caregiver Connect 2-2: Don't Take it Personally
Caregiver Connect 2-3: Your Mental Health
Переглядів 52Рік тому
Caregiver Connect 2-3: Your Mental Health
Caregiver Connect 3-1: Communicating With Your Loved Ones
Переглядів 26Рік тому
Caregiver Connect 3-1: Communicating With Your Loved Ones
Caregiver Connect 3-2: Asking for Help
Переглядів 35Рік тому
Caregiver Connect 3-2: Asking for Help

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