April 12, 2023
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Dear Friends,

We are excited to share that the details about our 2024 conference are finally here!

The 2024 DSF Biennial Family & Professional Conference will be held next year in Minneapolis, Minnesota, on June 20-22. The conference and associated activities will be held at the JW Marriott hotel, which is connected to the Mall of America. We encourage you to mark your calendars and consider joining us for this unforgettable experience.

This 6th biennial conference will bring patient families, clinicians, researchers, and industry professionals together to engage with one another and learn about the latest in research and clinical care for Dravet syndrome.

Details such as the conference agenda, how to register and discounted room rates for attendees will be available beginning early next year. In the meantime, you can learn more about the upcoming event here.

We hope we'll see you there!

Thank you,

Dravet Syndrome Foundation


Join Our Upcoming Webinar

We encourage you to join us for our next 2023 DSF Caregiver Educational Webinar: Let's Talk Special Education: Considerations for the Dravet student on Monday, April 17 at 4 pm PT | 5 pm MT | 6 pm CT | 7 pm ET.

We are grateful to Dravet parent Nicole Byrd, also an occupational therapist (OT), for volunteering her time and expertise to present this topic. Joining the panel are: Erin Reoyo, DSF Family Network Liaison. Erin is also a pediatric speech-language pathologist (SLP) with experience in the school setting and mom to a 9-year-old on an IEP. Cristin Wicketts, Lead Nurse in a large school district in Texas and aunt to a Dravet warrior. Crystal Ferguson, Special Education Administrator in North Carolina and LGS (Lennox-Gastaut syndrome) Foundation Parent Ambassador.

Learn more and register for the webinar today here.


Clinical Trial

UCB's STARS Study is testing an inhaler containing an investigational drug to see whether it could help people who experience prolonged epileptic seizures.

Individuals with epilepsy who are over the age of 12 and have experienced at least two prolonged seizures within the past three months may qualify to participate in the trial.

If you are interested in participating, learn more about the study and how to sign up here.

Heart to Heart

You asked. We answered: We have added an EVENING session for 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. You must register to attend these events but you are welcome to attend BOTH the daytime and the evening sessions (or simply choose one session that works better for you.) Participants must be registered with our DSF Family Network. Register for the evening and/or the daytime session.

B-Day Fundraiser

Looking for the perfect way to celebrate your birthday?

You can set up a fundraising campaign on Facebook in less than 5 minutes! Many of our fundraisers set up a campaign in honor of their birthday or other special event, then share it with family and friends and ask that donations are made to DSF.

There are no fees for non-profits when you host a Facebook Fundraiser. That means that 100% of donations come directly to DSF! Learn more about how to set up your fundraiser here.


News and Events

  • THANK YOU! - Thanks to your support, we raised over $20,000 through Give Up Your Cup in March!
  • Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
  • Advocate for Dravet - Learn about how you can get involved in legislative efforts to support our community here.
  • Host an Event - Hosting a fundraising event is a great way to unite your community and raise awareness for Dravet syndrome. Learn more about how to bring an event to your area here.
  • Caregiver Survey - Are you a primary caregiver to a child with Dravet syndrome 4-years old or younger? DSF worked with UCB Biosciences on a survey to help us learn more about the needs of families in the early stages of their medical journey with Dravet. Take the survey 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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