April 26, 2023
Logo with updated tagline

Dear Friends,

We need your input!

Every five years, we update our strategic plan to align with the needs of the Dravet syndrome community. This year, it is time once again for us to update that plan to best determine how we can help you.

A critical part of our mission is providing support to our patient community. And to do that, we need to know what is most important to you and how you would like to see us best support you.

We have launched an online survey for you to fill out if you are interested in sharing your voice with us about what matters to you as we update this strategic plan. The more people who take it, the more we can make sure our goals and plans are built for our community.

The survey is open now until Friday, May 5. Take the survey today.

Thank you,

Dravet Syndrome Foundation


New Resource Available

We understand the burden that our caregivers can feel. We often hear from our community that they have feelings of isolation, depression about the diagnosis, and anxiety over what their children's future looks like. We are constantly trying to provide resources to help manage these burdens and the stress that accompanies caring for a child with a rare form of epilepsy.

Our newest resource, Caregiver Connect, is a unique program designed to help families deal with these feelings. These modules share the experiences of other caregivers and provide useful tips on topics such as Taking Care of the Caregiver; Caregiver Burnout; Communicating Emotions, Needs & Concerns; and Managing Grief.

Dive into the modules here and start learning more about how this resource can support you.


Heart to Heart

Heart to Heart is a live virtual meet-up scheduled for the last Monday of each month. Come ask questions, connect, or just listen. We are now offering both daytime and evening sessions. You must register to attend these events but you are welcome to attend both or choose the one that works best for you. The focus for our next session will be on our new Caregiver Connect resource and how patient families can benefit from this tool.

Participants must be registered with our DSF Family Network. Register for the evening and/or the daytime session.

Shop and Give

Amazon's customer donation program, AmazonSmile, was discontinued earlier this year. However, that doesn't have to stop you from shopping for your favorite products while raising money for the nonprofits you love! Walmart's Spark Good program allows you to round up your change on your purchases and choose the charity you would like the change to go to. We would greatly appreciate it if you chose the Dravet Syndrome Foundation as your nonprofit the next time you round up your change! Learn more about Walmart's Spark Good program.

Board Updates

We are happy to share some exciting updates happening with the DSF Board of Directors! First, we'd like to thank Kate Hintz, our former board president, who served our team for two consecutive years. With Kate’s departure, Theron (Ted) E. Odlaug, PhD, who has served on the DSF board since 2019, will step into the role of board president.

We'd also like to welcome our new board member, Brad Galer, MD, who began his three-year term with DSF on April 1. Learn more about the board changes.


News and Events

  • Important Change to Drug Classification - Last week, UCB, a global biopharmaceutical company, announced the U.S. Drug Enforcement Administration (DEA) has published a final rule stating that FINTEPLA oral solution is no longer subject to the Controlled Substances Act (CSA). Learn more about the change here.
  • Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
  • Find an Event Near You - We have incredible community members hosting events all over the country! If you'd like to attend an event, find out which events are happening near you here.
  • 2024 DSF Conference - The date and location for next year's DSF Biennial Family & Professional Conference is here! Learn more about the upcoming event here.
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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