May 11 , 2022

Dear Friends,

When was the first time you learned about Dravet syndrome? For many, it was when a loved one was diagnosed or when a friend shared the story of their journey with Dravet. Most people don’t know about Dravet syndrome unless they’re directly connected in some way. 

This is why we work so hard to shine a light on Dravet syndrome and the families it impacts. By raising awareness, we can increase early diagnosis and make sure families have the information they need to manage their loved one’s care. We can help prevent patients and their families from feeling isolated, and we can attract much-needed attention from researchers, bringing us closer to better treatments, and ultimately, a cure. 

It starts with YOUR story.

Your story is powerful. By sharing it this June during Dravet Syndrome Awareness Month, you can make a huge impact. To help you feel more comfortable sharing your experience, we’re hosting two webinars in May with storytelling tips and techniques. Registration is free, and you’re welcome to join us live or watch on-demand. 

We can’t wait to hear your story!


Dravet Syndrome Foundation


In Memory of Our Loved Ones

Dravet syndrome wall of remembrance

Each year on June 15, DSF recognizes Dravet Remembrance Day in honor of those we’ve lost. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of Dravet syndrome for inclusion on DSF's Remembrance Wall. The names of those added to the Remembrance Wall will also be read aloud during a Facebook Live on June 15. This virtual wall and reading provides a place for families, along with our community, to remember and honor their loved ones. You may add a loved one to the wall at any time throughout the year, but please register by June 3 to participate in the live reading. Learn more here

storytelling workshop

Tell Your Story

Word have power and stories can change lives. Join us for two free storytelling webinars on May 11 and May 12 to learn how to share your story to raise awareness for Dravet syndrome this June. Learn more.

steps toward the cure

Host a Walk

You can help support Dravet syndrome research with your very own Steps Toward a Cure Walk! Host a fun event with plenty of support from DSF to make it easy. Gather with community and change lives. Learn more.

super sibling camp

Super Sibs Camp

Bringing the whole family to our conference this June? DSF Super Sibling Camp is available for siblings of a child with Dravet syndrome whose parents are registered to attend. Learn more.


News and Events

  • Wings of Hope - For just $25 you can sponsor a butterfly in honor or in memory of a loved one during our second Wings of Hope Butterfly Release. Wings of Hope will take place on June 25 in Fort Worth, TX at our 2022 Conference to celebrate hope and remember those who have passed. You do not need to be present to participate in our butterfly release. The last day to purchase butterflies is May 29. 

  • DSF Biennial Conference - Do you know which sessions you'll attend at our Biennial Conference on June 23-25, 2022? Don't forget to take a look at our conference agenda and plan your trip! This year's schedule is packed with experts and helpful insights.  

  • DSF Caregiver Connect Grants - Help your community connect and provide additional support with a Caregiver Connect Grant. Caregiver Connect Grants are available from $100-$300 and can partially or fully fund a local Dravet gathering or an ongoing Dravet support group in your area. For example, you can plan an event for families, a monthly coffee meet-up for moms, or a dinner for dads.

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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