June 29 , 2022

Dear Friends,

Have you heard the news? We have a brand new website! Go take a peek — we can wait while you poke around.

We're so excited to finally unveil it to you, not just because of the refreshed colors and logo, but because of what it means for our community: Better access to the resources you need.

Our website update comes with new accessibility features, such as font size increase (which you can access by clicking the purple person icon in the top right corner) and the ability to toggle to your preferred language at the top of our website using the "Select Language" pulldown menu. We've also made our content easier to navigate so you can find the resources you need. Plus, we've added more ways to search for doctors and comprehensive care centers or find clinical trials. 

Each family is on a unique journey, and we hope our updates help us better meet every individual exactly where they are on that path. Whether you're navigating a new diagnosis or are well-acquainted with Dravet syndrome, we've made sure that we're here for you every step of the way.

If you have questions, comments, or just want to tell us what you think about the site, we'd love to hear your feedback. Just reply to this email! 


Dravet Syndrome Foundation


Learn How To Share Your Dravet Story

As our community knows, rare diseases don’t receive as much attention from researchers or funders as diseases that impact larger populations. But by telling compelling stories and sharing your experiences, we can shine a light on the needs of our community. This helps researchers and clinicians better understand Dravet syndrome, supports families who are still in search of a diagnosis, and it expands awareness of Dravet syndrome to pharmaceutical and biotechnology companies as they work to develop new treatments. That's why we want to help you share your story! We partnered with Julia Campbell to create two storytelling webinars: Effective Storytelling Techniques That Raise Awareness, Engage Donors, and Build Community and How To Share Your Stories on Social Media


Share Your Stories

Stories have power and our Dravet syndrome families have so much to share! Read about the journeys of our DSF community members, hear their advice, and share your own using our online submission form. Learn more.

Maximize Your Impact

Many corporations match donations made by employees to nonprofits. Often this may double or even triple your donation. Find out if your employer has a donation matching program using our handy tool! Learn more.

Participate in Research

Research is our best hope for advancing treatments and eventually finding a cure for Dravet syndrome and associated epilepsies. Find out which studies are enrolling now and how you can participate. Learn more.


News and Events

  • Dye It for Dravet - Will you help us reach it by making a bold move for Dravet syndrome awareness? Dye It for Dravet is calling on you to join us and fundraise by dying your hair, beard, or mustache purple!

  • Cycling for a Cure - Enjoy the summer weather and raise awareness and funds for Dravet syndrome research by cycling for a cure! Email us to learn how you can support DSF at your next cycling event, or follow along and support Dan Hartley as he prepares for the world’s toughest bicycle race, Race Across America, in 2024. As he trains and competes, Dan has dedicated his cycling journey to raise awareness and funds for Dravet syndrome research.

DSF moderates private support groups for parents and caregivers of loved ones with Dravet syndrome.
These are great resources for families to ask questions and find support. 
Learn more

DSF is proud to be a GuideStar Platinum Nonprofit Profile participant.
Platinum lets us show quantitative metrics on the progress we’re making toward our mission!
Learn more


Dravet Syndrome Foundation
PO Box 3026  | Cherry Hill, New Jersey 08034
203-392-1955 | info@dravetfoundation.org

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