May 24, 2023
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Dear Friends,

Dravet Syndrome Awareness Month is just around the corner! We are excited to raise awareness for Dravet syndrome together, and we even have a few new ways for you to get involved for this special month (more on that below).

Be sure to mark your calendars for International Dravet Syndrome Awareness Day on June 23 and our annual Dravet Remembrance Day on June 15. On those days, we encourage you to raise awareness with us by sharing your story on social media, using the hashtag #DravetSyndromeAwarenessMonth. If you need help feeling comfortable in telling your story, DSF hosted two webinars with pointers, and you can find the links here.

Additionally, we will be working hard to raise money for Dravet syndrome with a few new fundraisers, like Dye it for Dravet and Cake 4 a Cure! Learn more about the upcoming fundraisers, or start your own here.

More details about ways you can get involved and support us this June will be coming soon, so be sure to watch our social channels and check your emails for more information. We look forward to celebrating this month with you!

Thank you,

Dravet Syndrome Foundation


Let's Fundraise Together!

With Dravet Syndrome Awareness Month kicking off next month, we look forward to bringing you new ways to fundraise with us as we raise awareness and funds to support our patients and find a cure. Whether you're dying your hair purple, winning a delicious cake, or simply sharing the word on your Facebook page, we appreciate your support!

Learn more about our upcoming fundraisers and how you can get involved here.


Day of Dravet

This year, we are excited to be bringing back Day of Dravet!

Day of Dravet workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision. This year, we will be hosting workshops in various locations across the U.S. Find the location closest to your family here.

New Webinar

You're invited to join us on Wednesday, June 14, for our next 2023 DSF Caregiver Educational webinar: Being Person-Centered: a Workshop for Dravet Families presented by Cheryl Ryan Chan. During this 75-minute workshop, we will discuss the principles of person-centered practices, the importance of deep listening, letting go slowly and safely and opening ourselves up to possibility and more. Register here.


Our DEI Coordinator, Tatiana Lopez, recently approached her mayor’s office and they issued a Proclamation, making June 23rd Dravet Syndrome Awareness Day in the City of Orlando, Florida.

This is an incredible example of how you can utilize your local government to help raise awareness for Dravet syndrome.

Learn more about Tatiana's story here.


News and Events

  • Research Grant Applications - We are now accepting research grant applications for 2023, including a special one-time call for applications focused on genetic impacts on patient phenotype with budgets up to $1M. Learn more about the qualifications and opportunities here.
  • Voice of the Patient Report - In honor of the anniversary of our Voice of the Patient report, we hosted a media roundtable to offer an update to journalists. Learn more about how are patient voices are making a difference by watching the media recording here.
  • Caregiver Connect - Caregiver Connect is a program designed to help families deal with the many emotions of being a caregiver to a child with a rare disease. Learn more about how this tool can help you here.
  • Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
  • 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 |

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