March 22, 2023
Logo with updated tagline

Dear Friends,

We want you to always feel like you have a community of supporters and access to the resources you need. That's why we created our Heart to Heart virtual webinar series. This free, monthly series provides an opportunity for caregivers to connect and engage with peers, support one another, as well as ask questions of DSF and our staff.

Heart to Heart takes place the last Monday of each month from 11-12 PT / 12-1 MT / 1-2 CT / and 2-3 ET. While sessions are one-hour long, attendees are encouraged to join for as much or as little as they can.

We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome. These sessions are a safe space for you to discuss what is important to you, connect, ask questions, open up about your challenges, share your successes, and meet members of the DSF staff and community.

To keep this a safe and confidential space, all parents, siblings, and extended family who are a part of the DSF Family Network are welcome to join. If you are not yet a member, you can join at this link.

Our next Heart to Heart session will be this Monday, March 27. We hope that you will join us and we look forward to connecting with attendees. Learn more and register today here.

Thank you,

Dravet Syndrome Foundation


Join Us And Give Up Your Cup

Could you go without coffee for one day if it meant funding life-changing research for children and adults living with Dravet syndrome?

Well, that's what our fundraiser, Give Up Your Cup, is all about. Now through the end of March, we are encouraging you to skip as many trips to the coffee shop as you can and donate the money you would've spent to the Dravet Syndrome Foundation.

The month is coming to a close shortly, so be sure to save your sips and make your donations soon!


New Research

We are excited to announce that we are supporting and funding a new special research project! DSF will support Dr. Satya Sahoo and Dr. Jeffrey Buchhalter to develop a Dravet Ontology.

The ultimate goal of these ontologies is to provide the framework for artificial intelligence (AI) analyses of existing data and literature. This would make deep searches to find information related to a specific question easier. Learn more about the project.

PAG Program

"Lucas is so excited to be able to get out and explore in a way he hasn’t been able to in the last couple of years. Without the help of the Patient Assistance Grant this wouldn't have been possible." - DSF PAG Recipient

Our PAG program is designed to provide a valuable resource to patients, helping families and caregivers offer the best quality of care for their loved ones, regardless of their financial situation. Learn more and apply for our 2023 PAG program here.

Clinical Trial

Argus trial is a multi-center clinical study investigating EPX-100 (Clemizole HCl) to alleviate seizures in children and adult participants with Dravet syndrome.

The trial aims to see if see EPX-100 (Clemizole hydrochloride) is able to decrease the number of convulsive seizures in patients with Dravet syndrome who are 2 years and older. Children and adults may apply. Do you have a loved one that may be able to participate? Learn more.


News and Events

  • Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
  • 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.
  • Recent DSF Accomplishments - Our foundation has directed over $6.7 million to research. See what that has helped us to achieve 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 |

Having trouble viewing this email? View it in your web browser

Unsubscribe or Manage Your Preferences