June 15 , 2022

Dear Friends,

Thanks to our incredible community, we’ve grown a lot over the last 12 years. We’ve pushed research, sparked awareness, and expanded our patient and family resources to better support our number one priority: You. 

And so, after 12 years of growth, we’re refreshing our look with a new logo, new colors, and a new font to better reflect who we are today and to symbolize our future. 

By combining a butterfly and a strand of DNA, we’re paying homage to our past while looking forward to new advancements. The butterfly is from our original logo and represents hope, while the DNA represents our focus on science and research. 

You’ll see the new look on our website, social media channels, and merchandise very soon. And that’s not the end of our brand refresh! We’re also launching our new website on June 23, 2022, with updates designed to increase accessibility and better support you no matter where you are on your Dravet journey. Stay tuned for more! 


Dravet Syndrome Foundation


Go Purple for Dravet

Are you ready to make a BOLD move to raise funds and awareness for the Dravet Syndrome Foundation? Dye It for Dravet is calling on you to help us fundraise by dying your hair, beard, or mustache purple! Dye It for Dravet was sparked by Jen Kuhn and her daughter Cora who is diagnosed with Dravet syndrome. In 2021, Jen decided to donate her hair to a child’s cancer organization and also to dye it PURPLE in support of epilepsy awareness. Her hair color spurred many compliments and conversations about epilepsy, specifically Cora’s journey with Dravet syndrome, and also led to many generous donations in support. Learn how you can participate in Dye It for Dravet and raise awareness with color!  


Be Prepared

Plan ahead and make the most of your conference experience! Download our 2022 DSF Conference “Know Before You Go” guide for answers to all of your conference questions. Learn more.

Take the Step

Raise awareness and funds for Dravet syndrome research while getting your steps in! Whether you want to host an event, participate, or sponsor, there are plenty of ways to get involved. Learn more.

Watch Us on TV

Don't miss the rebroadcast of our episode on The Balancing Act's Behind the Mystery highlighting Dravet syndrome and discussing the future of research and treatments. Catch it on Lifetime on June 21. Learn more.


News and Events

  • 2022 DSF Family and Professional Conference - DSF’s 5th Biennial Conference is just one week away! Join us on June 23-25, 2022, in collaboration with Cook Children’s Medical Center, at The Worthington Renaissance in Fort Worth, Texas. This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of people with Dravet syndrome.

  • Remembrance Day - Each year on June 15th, we recognize Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Join us TODAY to reflect and remember those who we have lost to Dravet syndrome during a Facebook Live at 12:00pm ET. Bereaved families are also invited to share the names of their loved ones who have passed away as a result of Dravet syndrome for inclusion on DSF's Remembrance Wall. 

  • Wings of Hope - If you're attending our 2022 Conference in Fort Worth, TX, make sure to join us for our second annual Wings of Hope Butterfly Release! Wings of Hope will take place on June 25 to celebrate hope and remember those who have passed.

  • Survey: DSF is raising awareness of a new survey of rare epilepsy parents/caregivers and adult siblings of patients with rare epilepsies to assess the resources needed to help prepare families living in the U.S. for long term adult care planning for their rare epilepsy loved one. Led by Zogenix — now a part of UCB, DSF, and the LGS Foundation — this survey will help us learn more about what type of resources are needed to support your loved one with rare epilepsy as they age into adulthood. Your participation will involve completing an online survey and will take about 15-20 minutes to complete. Go here to participate.

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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