June 21, 2023
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Dear Friends,

Thanks to all of you, we've had a great Dravet Syndrome Awareness Month so far! From Dye It For Dravet, to Remembrance Day and more, our community has come together to recognize Dravet syndrome and share the importance of research funding. We are thankful for everyone's support and appreciate your participation.

While we're getting close, the month isn't over yet and there is still a lot that we can do together for these last few weeks of Dravet Syndrome Awareness Month! It's not too late to start your last-minute fundraisers, make your final donations, or share your story one more time so we can end the month strong!

Want more inspiration on how to get involved? Keep reading below!

Thank you,

Dravet Syndrome Foundation

 

Upcoming Heart to Heart Session

Heart to Heart is a live virtual meet-up scheduled for the last Monday of each month. These sessions are designed to provide a time for you to discuss what is important to you, connect with our community, ask questions, open up about your challenges, share your successes, and meet members of the DSF staff.

We offer both a daytime session and an evening session. Attendees must register to attend these events (separate registrations for each session) 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 daytime session here.

Register for the evening session here.

 

Dye it for Dravet

There's still time to join us for Dye It For Dravet this June! Show your support in an extreme way by dying your hair, beard, or moustache purple to fundraise for Dravet syndrome research!

After you register you will be given your own fundraising page to tell your story, upload pictures and ask your friends & family for support. Are you ready to go purple for us?! Register here.

 

Researcher Updates

We are grateful that our community includes researchers dedicated to making progress on better understanding and treating Dravet syndrome.This month, we are taking a moment to recognize some of our recently funded researchers and the impact DSF funding has had on their projects. Watch for posts on social media highlighting these researchers and join us in raising awareness of their work.

Awareness Day

Did you know that June 23 is recognized as Dravet Syndrome Awareness Day? You can help us bring awareness to Dravet syndrome on this special day.

We encourage you to wear purple, post about your Dravet journey using the hashtag #DravetSyndromeAwarenessDay and re-share our social media content. Follow us to learn more.

 
 

News and Events

  • Caregiver Survey - Researchers at the University of Wisconsin-Madison are conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Dravet syndrome. Caregivers can learn more and fill out the survey here.
  • Dance Away Dravet - Community members in Jamison, PA are invited to dine, drink and dance with us as this DSF fundraiser! Learn more.
  • Cake 4 a Cure - See how you can participate in our most delicious fundraiser of the year here!
  • Double Down for Dravet - Our friends in Frisco, TX are invited to join us for an evening of fun and fundraising! Learn more about the event here.
  • 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.
  • Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
 
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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